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I Think My Husband Has Celiac


PrincessKitty

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PrincessKitty Rookie

I have to say I am extremely excited to have found this board. Just poking around, I have discovered a wealth of information.

My husband has been dealing with a blistery rash on his head for the past year. He's gone to 10 dermatologists, had lots of tests, and spent a lot of money in prescriptions. Finally, after a visit to the ER, we were recommended to an alternative specialist that suggested that perhaps he had celiac disease (among other suggestions). Since our visit there almost two weeks ago we have pretty much cut out gluten in his diet. My husband is having a difficult time with it and sometimes will get slack and not check labels. He said he was "starving" the other night and ate the one box of cereal that we still had in the house that wasn't gluten free (Shredded Wheat of all things) and promptly got sick in our bathroom.

Besides the rash/boils on his scalp, his other symptoms are chronic headaches/migraines, neck pain, constipation, bloating, depression, foggy brain/confusion, sleep problems, anxiety. He was also recently diagnosed with hypothyroidism. His levels were only a little bit off but they still haven't gotten that regulated. If this is all related to celiac, I can't even tell you how much money will save on prescriptions in a year! He is having the blood test today but has been about 80% gluten-free the past week or so. Will it still come back positive? Even if it doesn't come back positive, I am almost certain this has been his issue all along and am so beyond frustrated with the medical system that we have been dealing. His doctors made it a point to tell him that it was highly unlikely that his skin condition was related to diet.


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grainfree Newbie

Welcome! What wonderful support your husband has from you! It is quite amazing to realize the cause of this disease, regardless of the opinion of the medical community. Many on this forum have reported false-negative results even when maintaining a full gluten diet, and as such have chosen a gluten-free diet regardless of testing outcome. The waiting does cause impatience, but from many on this forum, the gluten-free life is worth it.

This site is a great source of information regarding DH and celiac disease. I know that it will help you both immensely. I wish you both the very best of good health.

ang1e0251 Contributor

His extreme reaction to the gluten is telling to me. Even if the blood test is negative, keep pushing forward with your idea. If the dr wants him to have an endoscopy, then he needs to continue to eat gluten for the test, don't take him off. If he doesn't want more testing, then just follow the diet and keep track of the results. But don't let him be hungry, it's easy to make mistakes that way. Make sure he has all the safe food he needs. He may experience extreme hunger for awhile. That's OK, lots of people do. Just have all the food he can handle available to him at all times.

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    • knitty kitty
      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long?   DGP IgG antibodies are produced in response to a partial gluten molecule.  This is different than what tissue transglutaminase antibodies are  produced in response to.   TTg IgA antibodies are produced in the intestines in response to gluten.  The tTg IgA antibodies attack our own cells because a structural component in our cell membranes resembles a part of gluten.  There's a correlation between the level of intestinal damage with the level of tTg antibodies produced.  You are not producing a high number of tTg IgA antibodies, so your level of tissue damage in your intestines is not very bad.  Be thankful.   There may be reasons why you are not producing a high quantity of tTg IgA antibodies.  Consuming ten grams or more of gluten a day for two weeks to two months before blood tests are done is required to get sufficient antibody production and damage to the intestines.  Some undiagnosed people tend to subconsciously avoid lots of gluten.  Cookies and cakes do not contain as much gluten as artisan breads and thick chewy pizza crust.  Anemia, diabetes and thiamine deficiency can affect IgA antibody production as well.   Do you carry genes for Celiac?  They frequently go along with EDS.
    • rei.b
      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
    • knitty kitty
      Food and environmental allergies involve IgE antibodies.  IgE antibodies provoke histamine release from mast cells.   Celiac disease is not always visible to the naked eye during endoscopy.  Much of the damage is microscopic and patchy or out of reach of the scope.  Did they take any biopsies of your small intestine for a pathologist to examine?  Were you given a Marsh score? Why do you say you "don't have intestinal damage to correlate with lifelong undiagnosed celiac disease"?   Just curious.  
    • rei.b
      I was tested for food allergies and environmental allergies about 7 months before I started taking Naltrexone, so I don't think that is the cause for me, but that's interesting!  The main thing with the celiac thing that is throwing me off is these symptoms are lifelong, but I don't have intestinal damage to correlate with lifelong undiagnosed celiac disease.
    • trents
      Welcome to the forum, @Kara S! Warrior bread is a grain free bread product. Google it. There are commercial mixes available, I believe, Youtube videos and many recipes. 
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