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Eating Gluten Again

hercules25

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hercules25 Apprentice
hercules25
Posted

So I started eating gluten again on Friday. My doctor said to try it again and see how I feel plus I want to eat gluten so I can have my antibody test ran. (by the way how long do I need to eat gluten for the antibody test???)

The first 2 days I felt great, as weird as it sounds. Than I started to get mild burning in my feet, they hurt to walk on. Than the next day a severe eye headache. Than I could not sleep last night. I had minor tummy tenderness but nothing to worry about. Than today BAM intestinal pains started (which always elevates my heart rate) and here comes the big D word. The only thing the DR knows is I carry the HLA-DA2(DQ1A*DQB1*02) gene (yes I know NON Celiacs carry this too), he says no to Chrons and Colitis (even though I take a Chrons med). I feel like since it took so long to get the symtpoms that it has nothing to do with wheat and gluten. I dont have food poisoning and no bacterial stuff going on.

Also when I was in my 20's I use to get where my hands would crack and bleed, on my finger tips and it was horrible now that is gone my head is always itchy and sometimes bleeds and burns. I thought it was Psorasis but Dermo said its a Dermatitis. I guess I should check to see if there are many forms of Dermatitis or just DH.

Are there different form of dermatitis??

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hercules25 Apprentice
hercules25
Posted
  • Author

Also should I request any stool samples by the dr and which blood work would be best requested?

ravenwoodglass Mentor
ravenwoodglass
Posted

It can take some time for antibodies to build up to a reaction when we have celiac or gluten intolerance. Your couple days to have a GI reaction follows that typical pattern. Now you have to decide if feeling like this for another 2 to 3 months is worth getting an 'official' diagnosis. You could still show a false negative on blood work or biopsy even after that extended gluten challenge. Your body however has given you the answer.

ravenwoodglass Mentor
ravenwoodglass
Posted

Also should I request any stool samples by the dr and which blood work would be best requested?

The blood work you are going to want after you have been back on gluten for at least 2 to 3 months are a celiac panel, hopefully with the newest DGP as well as the antigliadin IGA, IGG, TTG and a total IGA. It would be a good idea to have a vitamin and mineral panel done also to check your B's, iron, D etc.

txplowgirl Enthusiast
txplowgirl
Posted

I was gluten free for over 2 and a half years then went back on gluten for tests. I was fine for about 2 weeks then everything started happening. From D to anxiety, stomach pains etc. It takes time for the antibodies to build up in your system and then you start getting sick again. You need to be eating gluten for at least 3 months and the equivelant of 2 to 3 slices of bread a day to Hopefully test positive.

Februaryrich Rookie
Februaryrich
Posted

I was gluten free for over 2 and a half years then went back on gluten for tests. I was fine for about 2 weeks then everything started happening. From D to anxiety, stomach pains etc. It takes time for the antibodies to build up in your system and then you start getting sick again. You need to be eating gluten for at least 3 months and the equivelant of 2 to 3 slices of bread a day to Hopefully test positive.

Why do you even wanna get tested? Do you really care about having a label, after being gluten-free for that long?

  • 5 weeks later...
hercules25 Apprentice
hercules25
Posted
  • Author

My doctor said the same thing about wanting a label and I have starting to see the point. I just think for years of being sick an answer would be nice and like she said I may never get that answer I have been seeking. And for all that time I thought I was gluten free I never really was, finding out here and there that foods I consumed were not gluten free. I think at this point I just need to stick to the basic of food. I bought Campbells Butternut Squash and ate it but now I dont think that was gluten free. I have decided to say screw the test and stay gluten free.

As for my blood work I get it done every couple of weeks. My red blood shows a bit low but dr's just shrug it off.

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    • AlwaysLearning
      Gluten related ??

      By AlwaysLearning · Posted

      Get tested for vitamin deficiencies.  Though neuropathy can be a symptom of celiac, it can also be caused by deficiencies due to poor digestion caused by celiac and could be easier to treat.
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      Thank you so much for your response  Yes it seems as though things get very painful as time goes on.  I'm not eating gluten as far as I know.  However, I'm not sure of cross contamination.  My system seems to weaken to hidden spices and other possibilities. ???  if cross contamination is possible...I am in a super sensitive mode of celiac disease.. Neuropathy from head to toes
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      My only proof

      By Jmartes71 · Posted

      EXACTLY! I was asked yesterday on my LAST video call with Standford and I stated exactly yes absolutely this is why I need the name! One, get proper care, two, not get worse.Im falling apart, stressed out, in pain and just opened email from Stanford stating I was rude ect.I want that video reviewed by higher ups and see if that women still has a job or not.Im saying this because I've been medically screwed and asking for help because bills don't pay itself. This could be malpratice siit but im not good at finding lawyers
    • AlwaysLearning
      My only proof

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      We feel your pain. It took me 20+ years of regularly going to doctors desperate for answers only to be told there was nothing wrong with me … when I was 20 pounds underweight, suffering from severe nutritional deficiencies, and in a great deal of pain. I had to figure it out for myself. If you're in the U.S., not having an official diagnosis does mean you can't claim a tax deduction for the extra expense of gluten-free foods. But it can also be a good thing. Pre-existing conditions might be a reason why a health insurance company might reject your application or charge you more money. No official diagnosis means you don't have a pre-existing condition. I really hope you don't live in the U.S. and don't have these challenges. Do you need an official diagnosis for a specific reason? Else, I wouldn't worry about it. As long as you're diligent in remaining gluten free, your body should be healing as much as possible so there isn't much else you could do anyway. And there are plenty of us out here who never got that official diagnosis because we couldn't eat enough gluten to get tested. Now that the IL-2 test is available, I suppose I could take it, but I don't feel the need. Someone else not believing me really isn't my problem as long as I can stay in control of my own food.
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      If you're just starting out in being gluten free, I would expect it to take months before you learned enough about hidden sources of gluten before you stopped making major mistakes. Ice cream? Not safe unless they say it is gluten free. Spaghetti sauce? Not safe unless is says gluten-free. Natural ingredients? Who knows what's in there. You pretty much need to cook with whole ingredients yourself to avoid it completely. Most gluten-free products should be safe, but while you're in the hypersensitive phase right after going gluten free, you may notice that when something like a microwave meal seems to not be gluten-free … then you find out that it is produced in a shared facility where it can become contaminated. My reactions were much-more severe after going gluten free. The analogy that I use is that you had a whole army of soldiers waiting for some gluten to attack, and now that you took away their target, when the stragglers from the gluten army accidentally wander onto the battlefield, you still have your entire army going out and attacking them. Expect it to take two years before all of the training facilities that were producing your soldiers have fallen into disrepair and are no longer producing soldiers. But that is two years after you stop accidentally glutening yourself. Every time you do eat gluten, another training facility can be built and more soldiers will be waiting to attack. Good luck figuring things out.   
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