Author Topic: Introducing myself  (Read 22112 times)

0 Members and 1 Guest are viewing this topic.

Offline gfpaperdoll

  • Junior Member
  • **
  • Posts: 57
Introducing myself
« on: Sunday August 23, 2009, 05:29:49 PM »
Hello, I am a 63 year old woman that has gluten intolerance.  I have dealt with a lifetime of health issues.  I do not have HS but I have a friend that has it & it is in remission.  I also know of several other people with HS on the forums that have gone into remission on a gluten free diet.

9-7-2010 edit: I do have HS which I found out in December 2009 when I became allergic to nuts - pain - lots of pain that eventually moved to the armpits & got some tiny breakouts.  Rice also became a trigger food.  I had to quit eating all nuts & HS went back into remission. I had one huge bad boil about 17 years ago & years before that my daughter had boils as a teenager.  I did not connect all this to a HS problem until my recent issues.  It is on the edge of a problem if I eat something that I should not.  See my post towards the end of this thread for my most current findings on HS.

I thought I would start my own post & give you some general information.  I did not want to insult anyone by posting on their thread.  If anyone reads this you can disregard it, do further investigation on your own, ask me questions via this thread or via email or if this board has a personal message feature - I will be happy to answer any questions and offer any informational support that I can.

First off I am not selling anything - no product & no service.  On the contrary I suggest that you do not buy any gluten free products because you should not introduce any new foods into your diet.  Also, there are no firm guidelines as to what constitutes gluten free so some of these products have low levels of gluten & some of us cannot tolerate any.

What is gluten?  It is the protein in Wheat, Rye, Oats, & Barley.  Wheat is in almost everything...
What do we eat? all meats including seafood, all fruits, all veggies, nuts, & seeds, & rice.  Most of us omit dairy & I would encourage any new person to do the same.  You might be able to add some forms of dairy back in later.

I will post antoher post to this giving you some links to general information. If you have been tested for celiac but it came back negative you still have a huge possibility of being helped with a gluten free diet.  The testing does not pick up gluten intolerance, which many of us have that have health issues.

For people in the UK or Australia the spelling of celiac is Coeliac.  It seems that HS & gluten intolerance are very common in the English/Irish etc.  Although it is worldwide ...  People in UK & Australia should be very careful about eating any "gluten Free" bread type products because they have higher levels allowed than the U.S.

Well this screen is jumping all around & I cannot type so I will see if I can put my links on the next post.








« Last Edit: Tuesday September 07, 2010, 01:53:25 PM by gfpaperdoll »

Offline gfpaperdoll

  • Junior Member
  • **
  • Posts: 57
Re: Introducing myself
« Reply #1 on: Sunday August 23, 2009, 05:43:32 PM »
There is a skin manifestation to celiac & it is called Dermatitis Herpetiformis that can manifest as blisters that burst & are very itchy & can be all over your body.  These people get an automatic daignosis of celiac & the only treatment is a gluten free diet.

Some doctors if they know that you have a problem with gluten will not tell you because they think that the diet is too hard.  It is not, inconvenient yes, but once we are gluten free we dnever go back - the benefits are too great.

Here is the link to a thread that I have had on the gluten intolerance forum on brain talk for 2 & 1/2 years, over 4,000 people have read it.  I have no idea who is reading it- they do not post.  If you do not want to read the whole thing, skip to the last couple of postings where I talk about the lady with HS that tried to post her success story on an HS forum & got booed off.
http://brain.hastypastry.net/forums/showthread.php?t=13543

Here is the link to the gluten free & beyond forum a spin off from the brain talk forum because the brain talk forum crashed twice.
http://glutenfreeandbeyond.org/forum/index.php

Here is one of my favorite links about lectins
http://www.krispin.com/lectin.html

Here is a link I like about MSG
http://www.truthinlabeling.org/hiddensources.html


Offline gfpaperdoll

  • Junior Member
  • **
  • Posts: 57
Re: Introducing myself
« Reply #2 on: Sunday August 23, 2009, 05:59:22 PM »
You can go to the library & get books on gluten intolerance/celiac/gluten free.  There are many books on Amazon.  You can contact a support group for celiac in your area...
http://www.celiac.org/connections.php


http://www.csaceliacs.org/chapters.php

The gluten free diet has a huge learning curve & one eventually has to learn about cross contamination etc.  Then the hard part is that once you give up the wheat (gluten) other food intolerances may appear.  These are the common ones, dairy, soy, corn, eggs, & nuts.  & some of us cannot tolerate the nightshade veggies which are white potatoes, tomatoes, peppers, eggplant.  I cannot do peppers or potatoes but I tolerate tomatoes very well.

Gluten & dairy are addictive & takes about 3 weeks to get over the craving for it.  But once you are past that three weeks you will not get the cravings.  Gluten & dairy have an actual opiate effect on the brain.

Gluten Intolerance/celiac is an automimmune illness.  Some people are now making huge strides in linking it to diabetes, MS, lupus, fibromyalgia, schizophrenia & many other diseases.  & there are others that are looking at HS, unfortunately some of them are on the internet selling supplements & vitamins & their services which makes them less credible.  I am sorry that they are doing this.  Anyone that wants to make changes to their lifestyle can do it themselves they do not need to pay for information that is available everywhere.

Offline gfpaperdoll

  • Junior Member
  • **
  • Posts: 57
Thanks & Crohn's
« Reply #3 on: Saturday August 29, 2009, 07:25:47 PM »
Thank you for reading my posts & for not booing me off your forum.  I work with a lot of new people going gluten free, although I have lousy success with my own family, I seem to have a lot of other people that have had huge health benefits.  If you looked at the link to the Gluten Free & Beyond Forum, my story is in the Our Journey Thread, titled - My Families Stroy - or something like that.  I need to update it.

I read your sticky information about some studies with HS.  I read the one about Crohn's that I think was done in Sweden.  I have a story about Crohn's & Sweden.  My Crohn's story first.  I have written it on several forums.  I am not sure if it is in my family story so if I am doubling up, sorry...

I met a lady at a celiac support group meeting that was selling gluten free desserts.  I am a picky eater that likes good food.  Her desserts were wonderful.  I had not learned to bake GF yet so I periodically bought some things from her.  She is a veterinarian & worked for a veterinarian that had celiac.  His daughter had celiac & oddly enough their receoptionist had celiac.  This lady started baking GF birthday cakes so that her boss & the receptionist could also eat the cake.  She got really good at it & went into business.  She built a GF kitchen onto her house for her GF bakery business.
I was picking up my carrot cake one day & I asked her if anything was wrong she seemed so sad.  She said that she was not feeling well, that she had Crohn’s.  She started talking to me about her symptoms… I told her that I thought that she should be tested for Celiac.  I could not believe that she went to the Celiac Support group & knew all these people with Celiac & had never been tested for it.  But she did not think that she needed to do it because she had some great doctors & she had the “Crohn’s” disease label.  Well she thought about it & she tested with Enterolab.  Turns out that she had both of the Celiac genes, a DQ2 & a DQ8.  She got one from each parent.  She knew how to cook gluten free!!  She said about day 4 of the new GF diet she felt like a new person.  She was very upset with her doctors.  She thanked me profusely several times for talking her into getting tested.  Needless to say I got a few gluten free baked extras!!  I have not talked to her lately but I know that she was redoing her house to combine the kitchens & expand her bakery business & she got her own vet business.  Amazingly what you can do when you feel good!  She said that she was going to work with people with Crohn’s to get the word out.  I do not know what she is doing in that area, but I tell her story whenever I get a chance.

I have not stressed testing on this forum because for one thing when you have HS & go on the diet & the HS clears up, you have your diagnosis.  If you want testing you can research that on the Gluten Free & Beyond forum or Google it etc.  You do not really need a test, you are going to stick with it.  I also think that if just one person goes on the diet & sees success & helps one other person & that person helps another one.  My mission is done.  That is basically how the discovery of gluten intolerance came about, when the celiac gold standard was negative but people were still sick.  The gluten free diet is the real test (& dairy free).

I would also caution that it is not as easy as giving up bread, pasta, cookies, cakes etc.  Although, that is a huge step & helps.  Wheat is in more stuff than you can believe.  You will get sick from breathing the flour in the kitchen if you or someone else is cooking with it.   

Offline gfpaperdoll

  • Junior Member
  • **
  • Posts: 57
Misc & vitamin B12
« Reply #4 on: Saturday August 29, 2009, 08:04:55 PM »
I have heard from my friend with HS.  I am waiting for her reply for permission to post the paragraph that she wrote about her HS.  I think that I will PM the people on Brain Talk that post about HS to get some current info from them.

I do not post much about eczema because for one thing I can never spell it.  But eczema is one of those common things that people with gluten intolerance have before they go gluten free (GF) then it clears up completely.  Same with Acne Rosacea, I used to have it very bad & took antibiotics for years, completely cleared up when I went gluten free.   Same with a friend of mine she had acne rosacea  & it cleared up when she went GF.

If you have read on Gluten Free & Beyond you might have noticed that almost all of us take B12 & vitamin D.   I would suggest that whenever you go to the doctor, ask him to humor you & give you a B12 shot.  We have found that the so called optimal level of B12 is too low.  So even if you test “okay” still take a B12.  You can also take a sublingual, you can read about it on GF & Beyond, I am not sure which ones they take.  I cannot take a sublingual because I am allergic to all the sweetners that they use like sorbitol, mannitol etc etc.
We also take D.  I take Carlson’s 2000iu.  I take 2 of them a day.  I take Carlson’s because it does not have anything in it that I am allergic to.  My friend that has HS now gives herself daily B12 shots.  She takes 6,000iu of vitamin D a day.  Of course she is under a doctors care.  But she does all her own research & keeps him informed.  She also has osteoporosis.  Her very well known doctor now uses Enterolab for all his osteoporosis patients.  Progress…  Celiac is known to be the leading cause of osteoporosis even by most doctors not up to date with celiac/gluten intolerance.  My friend does not have the celiac genes, she is double DQ1, with a positive biopsy.  She suffered with HS for many years before she went on the gluten free diet. 

I try to get my vitamins from my diet.  But I do take calcium with D & magnesium because of a problem that I had with a drug that I was taking for high blood pressure, which I do not take any longer. (well & my age…)  You might want to get tested for your vitamin & mineral levels, if you have insurance & can get your doctor to run it.  Be sure to get a hard copy of the results & review it for yourself.

I will be back later to tell my Sweden story.
Thank You every one for reading my posts.


Offline gfpaperdoll

  • Junior Member
  • **
  • Posts: 57
Report from my friend that has HS
« Reply #5 on: Tuesday September 01, 2009, 04:20:41 PM »
I got permission to post this part of an email from my friend that has HS.

"Yes, I was quite surprised the other day when I realized I was GF 3 years in September.  It just seems so natural these days.  And I'm pleased to hear about all your new recruits.   The summertime is the pits for HS for your body seems to overheat.  It cannot perspire externally so it's internal, thus you feel quite nauseous & you often forget why.  So I immediately start drinking lots of water.  I'd rather do this than have to have terribly high dosages of anti biotics.  Haven't had a major problem for a while, and I'm sure it's due to my GF diet, and staying out of hot, hot weather."

Will be back later to post my Sweden story - sorta in a rush for time these days...

Offline gfpaperdoll

  • Junior Member
  • **
  • Posts: 57
46YO with HS has sister just dx celiac!!
« Reply #6 on: Friday September 11, 2009, 04:51:26 PM »
Here is a post that was posted yesterday on celiac.com - not too fond of that forum, since the moderators are very heavy handed with censorship for one thing because they sell GF products & do not like anyone posting that they are grain free, like me...  Here is the link to the whole thread - where 2 other women have posted, some of which I quoted on the Brain talk thread.  http://www.celiac.com/gluten-free/index.php?showtopic=51523

"Hello I am 46 year old female who has suffered from boils as long as i can remember! Going from one Dr. to another only for them to give me more atibiotics and send me home. I have had some Dr.s not even look at them just write a perscription. One day about 3 years ago I was looking up boils on the pc and after several pages of reading I found a link to HS. When I opened the link and saw the pictures I all most collapsed as that is what I have had for so many years with no Diagnosis from any one including a Dermatolagist. So I have suffered greatly over the years. Including 3 times boils in my throat that were very dangerous. Since I was about 17 I have had what I thought was ibs being taken to the hospital several times over the years with excrusiating pains in my stoumach. I am home sick now and have been in and out of the hospital all tests coming back negative. I swear i have them in my intestines but the tests dont show them.
NOW!! my sister who is very concerned for me told me to look up Celiac as she has been diagnosed with it. So I did I had some of the symtoms but it says peoples sytems are different so I wasnt sure if that was the connection untill.. i googled celiac/hs then BOOM it all came together I have been allergic to gluten my whole life and no Doctor caught it in 46 years and with all my symtems. I was trying to eat pretzels and soda crackers to settle my stoumach what a mistake. All Gluten!
I am a cook and feed 100 seniors everyday working with many many ingredients containing gluten no wonder I am so sick and never got boils with my last 2 periods which ALLWAYS happens to me they were in my stoumach. I am sitting here very emotional its like finding something you have been looking for your whole life. I am so glad i never let them cut me up or remove my belly button like they suggested.
I love the internet for giving me the power to find answers for myself as there is a reason they call it a practice as they are all practicing and try to get it right but many times doing the opposite. I have a drawer full of different perscriptions for many different things they thought it was for if i took them all I would be dead! Thank- you so very very much for this information and now I am going today to see my new Doctor for a celiac test. I have sworn off of all gluten and will hope and pray a good mask will help on my job as I love my job and couldnt imagine not cooking just my luck I guess being deadly allergic to the thing you love the most and your lively hood it sucks. But at least i think I am finally on the right track for the first time in 46 years "

Offline LIGA girl

  • SkinCell Grand
  • of Cicadas
  • *****
  • Posts: 3265
  • Gender: Female
  • Me Simpsonized!
Re: Introducing myself
« Reply #7 on: Saturday September 12, 2009, 01:19:42 AM »
This thread is of interest to me as there is coeliacs and suspected DH in my family. Both my daughters and one of my sisters have it. My skin disease it Linear IgA and when I was first diagnosed I went onto the GF diet (and also dairy free as the the protein molecules in dairy, casein, are similar in structure to the gluten molecule,  and the two being eliminated can have a quicker effect. I was on the diet for 9 months but it did not make any difference. I also had the coeliacs blood test and tested negative, but it is only the bowel biopsy which gives a conclusive diagnosis. I have been on meds for my disease the whole time which also can negate the effects of coeliacs or gluten intolerance.

I mentioned to my derm my family history and she said that both my illness and my family members' are IgA mediated and that all she can say is that having one may protect us from the other. I am still tempted to try the GF diet again, however.

LG

Offline gfpaperdoll

  • Junior Member
  • **
  • Posts: 57
Re: Introducing myself
« Reply #8 on: Saturday September 12, 2009, 02:22:50 AM »
Hi Liga, Thanks for posting.  Sometimes the tests just do not pick up gluten intolerance which can be as bad or worse than celiac.  Plus it seems that gluten intolerance comes with all the other autoimmune illnesses.  

You are correct on the casein, much better to delete it right off, especially when your system is so stressed.  Some people can add in some dairy later when they are healed, but you know really dairy is not all that good for us anyway.  

I have not researched your skin problem yet, but I do know that gluten intolerance/celiac comes with a whole lot of skin issues.  If I just wash my hair with a shampoo containing wheat I get big bumps all in my head that take weeks to go away & that is just with one shampoo - I do not forget to take my shampoo to the salon anymore!   ::)

There are a lot of people in Australia that have issues with gluten intolerance/celiac.  My friend that has HS has family that lives in Australia.  They are originally from England.  Nice that England & Australia have reciprocal medical care for vacationers!!

I encourage you to try the diet again.  One little thing in your diet could keep you from healing.  Or not in your diet.  If you are gluten free (GF) you will get glutened by cooking with regular white flour, regular mixes, and other wheat items in the kitchen.  You would need to replace your wooden cooking utensils & other porous surfaces like cutting boards, & cast iron skillets.  If you choose to eat the replacement GF crackers etc - be aware that a lot of them contain low levels of gltuen that some of us cannot tolerate.  Also, I hear that most of the candy in Australia contains wheat or barley malt.

If you are in the country you could get contaminated with the feed that contains the gluten grains (&the dust flys up everywhere)  pet food...bird seed...  If your spouse eats gluten or drinks a beer & kisses you without brushing their teeth - you will get gluten zapped big time... BTW there are 3 gluten free beer brands here in the U.S.

Please write back & lets see if I can help you map out a eating plan, did you also go soy free?  IS summer starting in Australia now?  Wishing you a great weekend
jeanne
Houston, TX
« Last Edit: Saturday September 12, 2009, 02:28:10 AM by gfpaperdoll »

Offline LIGA girl

  • SkinCell Grand
  • of Cicadas
  • *****
  • Posts: 3265
  • Gender: Female
  • Me Simpsonized!
Re: Introducing myself
« Reply #9 on: Saturday September 12, 2009, 03:15:11 AM »
Hi Jeanne

I was encouraged by my derm to continue on the GF diet, as one of her interns made the observation that gluten is linked with autoimmune conditions.

It would be difficult to stick with it as my partner is a baker and brings home lovely bread. When I was on it before I just gave up on bread as GF bread is not that nice. My diet then was mainly fruit vegs and meat and nuts, with some dark chocolate for a treat. I was very strict with it and dont think that I had any gluten at all. I also started on soy which I had not had before and now still have soy lattes as I love them, but I do not have a great deal of soy now.

I truly believe that it will not be until I get off my meds that anything conclusive regarding a GF diet and my condition could be stated, but I want to try it again. I am sure that any improvement would be attributed to my meds if I did.

Kind regards
Vicki


Offline gfpaperdoll

  • Junior Member
  • **
  • Posts: 57
Re: Introducing myself
« Reply #10 on: Saturday September 12, 2009, 06:02:24 AM »
Hi Liga, even if you do not eat the bread, the flour dust on your partners clothes would be enough to keep you having problems.  It is really hard to live in a wheat filled world!  Some of us that have a problem with gluten explain it as being like rat poison - we do not want to be anywhere near it.
My grandchildren who are not GF but should be, wash their hands when they get to my house so they do not contaminate my GF house...  One time I had a guy come over to repair my computer.  He left, I sat down to the computer with my apple slices & raisins snack & got glutened from the gluten his fingers left on my keyboard.  He probably ate something in the car before he got to my house...  It is hard to believe until it happens to you.

Sorry I still have not read up on your skin condition, but I will do that tomorrow & get back to you.  It is 1:00a.m. here now & I am up past bedtime!!

Offline LIGA girl

  • SkinCell Grand
  • of Cicadas
  • *****
  • Posts: 3265
  • Gender: Female
  • Me Simpsonized!
Re: Introducing myself
« Reply #11 on: Saturday September 12, 2009, 06:24:54 AM »
Hi Jeanne

sorry I didn't answer your question about Summer and yes it has started here, today it is unseasonably warm, around 30oC! A lovely day for Spring.

If you want to look up information about my disease a good link is http://emedicine.medscape.com/article/1063590-overview. It is a very rare disease.

It says that it is not linked with gluten intolerance but there has been one reported case where it was linked. And DH used to be indistinguishable from Linear IgA.

I have taken lots of different meds for it and am currently on prednisone and methotrexate, both in fairly low doses nd my disease is fairly well controlled, though I do have many lesions still.

I did write a fairly comprehensive article for wikipedia about it but it has been modified a lot and wiki now has very sketchy information about it.

Our weekend is half over already! I hope you have a good one

Vicki

Offline gfpaperdoll

  • Junior Member
  • **
  • Posts: 57
Re: Introducing myself
« Reply #12 on: Saturday September 12, 2009, 08:20:02 PM »
Hi Vicki, I read about Linear IGA this morning.  I see why your very astute doctor wanted you GF.  IMO it looks like it is very closely related to DH and DH was mentioned in the first paragraph, celiac ws also mentioned. Also the connection that they have made with people that have Linear IGA that also have other autoimmune diseases all of which are associated with celiac.

Gosh, I think ya'll have good doctors in Australia.  A lot of people are getting diagnosed gluten intolerance/celiac there.

I do not know why you did not see any results with a 9 month GF diet.  Did you add in the soy while you were GF?  I think that you should start being aware of wheat & make sure that all the personal care products & soaps not have any of the gluten grains in them. 

Now I wonder if a friend of mine that went GF whose mom is Irish & Italian had Linear IGA when she was hospitalized & in the ICU for days.  I posted about it on the HS thread on brain talk.  She is now GF & off 11 meds & lost like 80 lbs...  & no more skin problems.  the hospital swore that they tested her for DH & HS...  she got out of the hospital with no diagnosis.

I do know that I saw improvement at year 1, year 2 & year 3 gluten free.  It takes about 6 months for the gluten to cycle out of your body...  Now at 5 years + I thank I am even feeling better than ever.  Like I told my dil the other day I could drop like a rock tomorrow from cancer or a heart attack but today I feel fantastic.


Offline gfpaperdoll

  • Junior Member
  • **
  • Posts: 57
Re: Introducing myself
« Reply #13 on: Saturday September 12, 2009, 08:31:56 PM »
I think that you should seriously think about going GF while you are on the meds.  Really nothing to prove to anyone but yourself.  The reason is that you have an autoimmune disease that is linked to other autoimmune illnesses & gluten is the known trigger for several of them (& some of us think most all of them).  You would lower your chances of getting another autoimmune illness (including cancer).  Also the older you get the percentages go up of getting other autoimmune illnesses.

Do you have any other health issues?  the ones that are not worth mentioning until you put them all together?  It is also good to take a large piece of paper & write down all the health issues that your other family members have.  See if you see a link there.  For me when I did that it was like an open book & a huge aha moment... Not everyone has a granddaughter (11 YO) that has lost all the enamel on her teeth, cavities, has hives, has rashes, constipation, asthma type illnesses, walking pneumonia every year, cranky, sleep problems, overweight - (meds & gluten), catches every cold & flu that comes around, stomach aches & other misc stuff I am sure my son forgets to tell me about... ::)  She missed about 30 days of school last year...

later...
Jeanne

Offline LIGA girl

  • SkinCell Grand
  • of Cicadas
  • *****
  • Posts: 3265
  • Gender: Female
  • Me Simpsonized!
Re: Introducing myself
« Reply #14 on: Sunday September 13, 2009, 11:18:06 AM »
Hi Jeanne

I will do the GF diet, it is just getting motivated to start. At the beginning when I got my illness I would have tried anything that may be a cure for it which is why I was motivated to do the gluten/dairy free diet, but it made no difference and now after 3.5 years I have given up hoping that there may be a cure for me. The worst thing about what I have is the fatigue, it has stopped me from having a normal life since getting Liga, although I look normal, and even healthy most of the time  :). That is a  bonus!

I dont have any other health issues although when I was 28 I got asthma, not really bad, but the fatigue which I got with it was a bit like now only it passed after a few months on puffers and the asthma is only very occasional & mild now. One doctor said that is unusual and at the time I was beside myself as I didnt think I would get better and the fatigue I had then was never really explained by the docs. I have a niece with allergies but at 12 yoa she is growing out of them and apart from her my family seems to be very healthy, both my parents are in their 80s and I had two granduncles who lived to nearly 90! My paternal grandmother lived to 70 and I think she may have had undiagnosed lupus or rheumatoid arthritis as they didnt know so much about it in those days. My other grandparents died of cancer in their 60s or 50s.

Cheers
Vicki

Offline gfpaperdoll

  • Junior Member
  • **
  • Posts: 57
Re: Introducing myself
« Reply #15 on: Sunday September 13, 2009, 04:35:05 PM »
Hi Vicki, re your niece, my guess is that she is going into puberty the hormones will give her some protection from symptoms, then when she is in her early 20's she will be having problems again.  Also, some women when they get pregnant see some relief from symptoms due to the hormone change, but they immediately get worse after birth & usually get depression.  Lot of kids now get diagnosed in college with gluten intolerance/celiac & DH.  Allergies is one of the signs of a gluten problem (my allergies were awful...)

Do you have the funds to get the gene test for gluten intolerance/celiac?  In the U.S. I recommend Enterolab.com because they test for the gluten intolerant genes in addition to the celiac genes.  A lot of us with gluten intolerance have two DQ1 genes.  DQ1 also comes with neurological issues.  Some other gluten intolerant genes are DQ3, DQ7, & a couple others that I forget the names.  The celiac genes are DQ2 & DQ8.  Well those are the two that the U.S. recognizes.  In other countries they recognize about six or seven genes as the celiac ones - including DQ1 & DQ3.  So if you only test for DQ2 & DQ8 & it comes back negative it does not tell the whole story.  Those of us that have a double copy of the same gene know that it is not good!  :o

Offline gfpaperdoll

  • Junior Member
  • **
  • Posts: 57
Re: Introducing myself
« Reply #16 on: Sunday September 13, 2009, 04:49:50 PM »
I would be looking at the health history of the family of the grandparents that died young of cancer.  IMO if they were from England or Ireland - you have your answer.  Not that people from Germany, Italy etc do not have the same problems...  I think these genes all started with the Vikings & we know they were spreading their seeds everywhere.  It is just that the people from England & Ireland have such a huge problem with gluten.  There is another illness that comes from the Vikings & that is Hemochromatosis, which is too much iron in your blood.  the only cure is to give blood under a doctor's care.  Hemochromatosis is often associated with celiac.  My father's brother died of Hemochromatosis 50 years ago.  I am related to anyone that has Hemochromatosis back to the Viking carriers...

I encourage you to read up & learn about food.  You can start with my link to lectins & MSG.  For some of us healing is not as easy as just going gluten free.  Which you know is not easy at all!!!!

I have had a huge problem with foods my whole life.  So I am somewhat used to changing my diet. 

Offline gfpaperdoll

  • Junior Member
  • **
  • Posts: 57
Re: Introducing myself
« Reply #17 on: Sunday September 13, 2009, 05:16:32 PM »
Vicki, did you say that both of your daughters & your sister have coeliac?  Do they have DH?  Are they gluten free?

I think that we can figure this out for you...  Did you add soy to your diet when you went GF?

When one goes gluten free it is very important not to add anything new into the diet - like soy.  & soy would be the worst thing that you could add in.  Some people do not react to soy lecithin but some do.

Your partner could be a great asset by learning to bake GF bread at home!!  But wait until you are all well.  A friend of mine is VERY allergic to sorghum!  A flour that I use when I bake occasionally - about 4 times a year.  I just cannot eat grains which is a real bummer because now I am a great GF baker.  I feed all my gluten eating friends my lemon bars, cookies & carrot cake etc & they love my food & would never know that it is GF unless I tell them.

Another friend of mine referred me to her GF friend that has a couple of other autoimmune illnesses & she was still sick on the GF diet.  I encouraged her to give up her "healthy" yogurt that she was eating every morning & then I found out that she was eating chips & salsa that had MSG!!!  She is getting better now.

Offline LIGA girl

  • SkinCell Grand
  • of Cicadas
  • *****
  • Posts: 3265
  • Gender: Female
  • Me Simpsonized!
Re: Introducing myself
« Reply #18 on: Monday September 14, 2009, 03:04:09 AM »
Hi Jeanne,

thanks for your offer of support. I started the GF diet today. I already know a lot about it as I have been on it before and even then I had had a few friends & one daughter with coeliacs so knew a fair bit about it. I have done GF baking and  agree that cakes etc made GF are wonderful! Better than the gluten ones. Unfortunately when my last computer died I lost my best GF chocolate cake recipe, but I think I can make it from memory when I need to. Whenever I make it and take it to functions it gets devoured! My daughters always ask me to make it for their birthday cakes (they are 24 and 28!)

My sister and daughters are not all diagnosed coeliac and DH but one of them is, and as they all have such similar symptoms, they have classified themselves as such and stick to a GF diet. The niece with the allergies is the daughter of my sis with coeliacs. That is an interesting theory about her move into puberty, I will keep that in mind. Her worst allergy was to egg but now she is fine with eggs, only since late last year. She used to get anaphylactic reactions to them. My liga I am sure I have had since puberty at low levels and I always thought it was pimples. When I was 16 it got bad on my bottom and I was diagnosed with ringworm and treated for it, I am sure that was liga as the treatment was not that effective, but it all cleared up in about a year anyway. It would get better during my pregnancies, worse after them, then came on big time when I reached menopause, a few years ago, this may all be coincidental but I dont think so.

My partner doesn't like to bake at home but he has a good understanding of gluten in food due to his bakery training. I like to bake from time to time so am happy to do the GF baking myself. I have increased my intake of soy a little on the diet but I usually have some of it anyway. I wont add in anything new as you suggest.

I havent had any gene testing done and am not intending to at this stage. I know my blood serum has been sent to France for testing where they are doing some research into blistering skin diseases and I think they are doing gene testing on it there, I will hopefully got those results in a few weeks when I see my derm.

My grandparents are all English/Irish/Welsh descent. The one who I think had lupus or similar was born in England. Coincidentally, my ex husbands brother (they are of Irish descent) has hemochromatosis and there is also a bloood clotting disorder in their family which could also affect my kids. So maybe you are related!

Thanks again for your help Jeanne .... I must update my journal on here again too to track my progress

Cheers
Vicki


Offline gfpaperdoll

  • Junior Member
  • **
  • Posts: 57
Re: Introducing myself
« Reply #19 on: Tuesday September 15, 2009, 01:50:54 AM »
Vicki, that is such great news!!  I am so excited for you.  I will try not to be a pain with food suggestions.  I do have a great chocolate cake recipe & I will post it on Gluten Free & Beyond this weekend & give you the link.  I am going to re-do my thread on HS from Brain talk & repost to the GF&beyond forum.  but since I am a working girl that had to stop at the grocery today & then cook dinner & make lunches - which I should have done yesterday, most of my new stuff till have to wait till the weekend.

re your daughters, there are quite a few of us that think that the real diagnosis is the results of the GF diet.  so many of those tests turn out with false negatives & people are taking that because their doctors are telling them they do not have celiac & they really do not want to do the diet.  So really they never give it a chance - I bet if those doctors were suffering they would try it...

Yu could PM me a link to your  journal.  That is a great idea, you might also keep a food journal if you are not doing that already.
I will encourage you to give up the soy & to eat as grain free as you possibly can.  I eat more the Paleo way - with exceptions - we all have our exceptions! :)   I feel much better without rice.
Corn is another biggie that is hard to give up but worth it...