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I was diagnosed with Celiac sprue in May and was relieved for the past 14 + years this was not all in my head. I went on a all protien diet at first not knowing what I should eat?? I live in a very rural area and gluten free just was not a issue in fact the hospital dietian only had one other patient that was a celiac at that time. So I have had to learn on my own the hardway and now I am very sensitive to gluten but I have several other things happening that I am not sure is related to being a celiac so I need to ask all of you ..

1) I sometimes break out in the itchies from top to bottom... I had seen a dermotologist and they biospied me but did not find what they are looking for.. At the time I had three hershey bars (one a day) then later found out candy is often dusted with flour and do not list it as a ingredient... I am taking allergy medicine every other day to prevent a scratch attack .. Has anyone else had this problem ?

I did break out last week with little bumps mostly unvisible in the back of my knees down to my ankle... called the dermotoligist and she said nothing to worry about.... Weird...

2) I began having some pain in my tail bone then pain in my wrist joints. The doctor gave me a athritis test and x-rayed my tail bone and said I was fine. Last night the pain was horrible in my shoulder bones, arm joints, wrist and all the bones in my fingers.. Has anyone experienced such pains ?

3) I am very active and exercise vigorously 7 days a week usually and had lost a lot of weight prior to this whole celiac bizz on my own... but when I finally found a bread that I can finally choke down I gained 10 pounds and I am afraid to gain anymore... any suggestions ? Most celiacs I have read about are worried about being so thin, wish I had that problem.

I know I should be able to get this information from my doctor but this last visit he though the only food I was to avoid was wheat... Boy that really worried me. Please give me some advise I could use........

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I too have had all kinds of changes/wierd things happening since going gluten-free. My skin has totally changed, I am often itchy and get rough dry skin off and on, mostly on. My skin was never dry before, I wasn't itchy before. I get very wierd joint pain and other pain and then it goes away but I also feel stronger everyday. My theory is that things are working themselves out now that it is getting some nutrition.

Maybe working out so heavily isn't such a good idea right now, your body may need time and energy to catch up internally before devoting so much to muscle output? My belief is that it is good to keep moving, your lymph system cannot function to move waste unless there is some movement, but if there is too much waste to move to quickly along with other biological functions that need to start running properly and organs/glands that need to get the nutrition your hopefully now absorbing...that is a lot to ask of your system. Just a possibility.

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I was diagnosed with Celiac sprue in May and was relieved for the past 14 + years this was not all in my head.  I went on a all protien diet at first not knowing what I should eat?? I live in a very rural area and gluten free just was not a issue in fact the hospital dietian only had one other patient that was a celiac at that time.  So I have had to learn on my own the hardway and now I am very sensitive to gluten but I have several other things happening that I am not sure is related to being a celiac so I need to ask all of you ..

1) I sometimes break out in the itchies from top to bottom... I had seen a dermotologist and they biospied me but did not find what they are looking for.. At the time I had three hershey bars (one a day) then later found out candy is often dusted with flour and do not list it as a ingredient... I am taking allergy medicine every other day to prevent a scratch attack .. Has anyone else had this problem ?

I did break out last week with little bumps mostly unvisible in the back of my  knees down to my ankle... called the dermotoligist and she said nothing to worry about....  Weird...

2) I began having some pain in my tail bone then pain in my wrist joints.  The doctor gave me a athritis test and x-rayed my tail bone and said I was fine.  Last night the pain was horrible in my shoulder bones, arm joints, wrist and all the bones in my fingers.. Has anyone experienced such pains ?

3) I am very active and exercise vigorously 7 days a week usually and had lost a lot of weight prior to this whole celiac bizz on my own...  but when I finally found a bread that I can finally choke down I gained 10 pounds and I am afraid to gain anymore... any suggestions ?  Most celiacs I have read about are worried about being so thin, wish I had that problem.

I know I should be able to get this information from my doctor but this last visit he though the only food I was to avoid was wheat... Boy that really worried me.  Please give me some advise I could use........

It is possible you may have Dermatitis Herpetiformis

Dermatitis Herpetiformis is a rare condition with a very itchy rash.

DH associated with Coeliac Disease.

It is, however, difficult to diagnose and not many skin specialists understand about it.

You can see examples & descriptions of DH & ask for advice on this website.

http://www.dermatitisherpetiformis.org.uk/

Bone pain can indicate low bone density which is a risk for coeliacs.

Have you had a DEXA scan? This can show the state of your bones.

Please see :

http://coeliac.info/suppboard/viewtopic.ph...&highlight=dexa

I used to be underweight before diagnosis. Then I could eat any food & it would rush through me as my body tried to get rid of the gluten.

When you are diagnosed with celiac disease your body can recover on the gluten-free diet & it absorbs more, including the calories!

However, being overweight could indicate a thyroid problem which is sometimes found in coeliacs, so you might want to have your thyroid checked - but I think you may find you are just absorbing more food now your guts are healing.

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Careful with low calcium intake: celiacs tend to improperly absorb calcium and also eliminate milk products from their meals. Just be sure you get enough calcium (1g per day is needed, I believe, check other sources too).

And yes, I, too, suffer from different forms of skin problems (incl dandruff), that get worse when my digestive problems get more severe, and I'm pretty sure they are related. However, you indicate even worse symptoms than I ever had, so you should have a trip to a city with better doctors to check your condition.

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    • I figured I would update those who were wondering.  I have gotten the appt. so far moved up to August 30. I am waiting to have gene testing done via swab for all 3 of my kiddos tomorrow. My daughters celiac antibodies came up negative but her IgA is low which the ped said could cause false negative antibodies for celiac so she will need to see a GI dr. also. The pediatrician is going to call the GI to try to get them in sooner. I am keeping them all on a gluten diet until the GI dr. decides what to do. I am on the cancellation list already for my son, however I am not going to be persistent with my phone calls to them until I have the results of the gene test. I really want that result in my hand before going to the GI dr if I can. Maybe if he is positive, along with his bloodwork and my history they can forgo the endoscopy. But he will eat gluten till then.  My husband and I have been very honest and upfront with him as to what is going on and the possibility of the endoscopy and what that entails and although scared in general he seems ok after assuring him that since I have it he has me to help him every step of the way.  Going through his current diet with him I realized that he is truly on such a low gluten diet that I am actually surprised his bloodwork shows antibodies at all!  So I told him to make a list of allllll the gluten he could possibly think of eating and he needs to pound it until the GI visit or endoscopy. Funny thing is everything he keeps thinking of to want to eat...is already gluten free!  The other night we were at a friends and he asked if he could be done with his hotdog. I made him finish just the bread 😂 Thanks for your help and advise and I will keep y'all posted on both kids!  My oldest is a ok as far as all his antibodies. Just actually had a follow up for other immune issues and all his levels are now normal!
    • I like your plan Cara, I may have to include it in my sons.    Poor little guy is still very very sick. I think he is resisting and cheating, despite having the support of two other siblings and a 100% gluten-free home. 
    • Despite it being a nightmare, I did wait for my kids to get biopsies. At one point I had one severely ill child gluten-free and two more waiting having to eat it. It was worth the wait though and I think long term a biopsy may be worthwhile, especially for school. I have already had issues with schools and camps so having a firm diagnosis has been helpful. 
    • Knowing that the reaction to gluten in celiacs is an uncalled for immune system reaction, I was thinking of how a cure would be possible. Maybe a medicine that somehow turns off the immune system. The only thing that i've heard do that... HIV.  obviously that's way worse than celiac. Just some food for thought.
    • Well, you can probably get an apple or something.  You might be able to get someone to boil you some eggs.  But be careful of things like nuts that should be naturally gluten free.  They have almost always been soaked in a flavor solution that usually containes caramel coloring, "soy" (wheat) sauce and other aditives.  If I am really hungry and must eat in a Chinese restaurant, I order plain white rice and steamed vegetables.  But even so, you must monitor it carefully.  The rice sometimes has other substances added to give it a better texture, and very often the vegetables have in fact had "just a little bit" of soy sauce added.  To be fair, celiac disease is hardly ever found in East Asians, so understandably people are not tuned it to it.  Also, culturally, with the exception of fruits, it is generally thought that the flavor of foods needs to be enhanced, so it is had to find anything natural even in the "western" gorceries. Even in the western restaurants, be careful.  Fish and meat and often vegetables are usually pre-marinated. I will not even attempt to address the issue of cross-comtamination, since that is a whole higher order of things. I do know what I am talking about; I have celiac and have worked here for nearly 7 years.  
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