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Problems


cjjones5969

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cjjones5969 Newbie

I was diagnosed celiac January 2023, with no symptoms.  I have been on the gluten free diet since, but since the 6th month of the diet to date, I have developed symptoms-stomach pains, bloating, distended stomach, headacres and I am always hungry despite actually eating more.  The dietitican says I'm doing great, my doctor is pleased, but I'm confused.  Shouldn't I be getting better?

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Scott Adams Grand Master

Do you eat out in restaurants? This is a common source of contamination. The first step for you would be to re-examine your diet to be sure that it is 100% gluten-free.

This article has some detailed information on how to be 100% gluten-free, so it may be helpful (be sure to also read the comments section.):

 

 

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trents Grand Master

Welcome to the forum, @cjjones5969!

Just out of curiosity, if you had no symptoms, what led to your diagnosis?

You may have developed some additional food intolerances which is very common in the celiac community, particularly with foods whose proteins are similar to gluten. Chief suspects are dairy and oats, even gluten free oats. The protein casein in dairy and the protein avenin in oats are similar to gluten. But it can be almost anything. Those two are very common offenders, however.

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cjjones5969 Newbie
11 minutes ago, Scott Adams said:

Do you eat out in restaurants? This is a common source of contamination. The first step for you would be to re-examine your diet to be sure that it is 100% gluten-free.

This article has some detailed information on how to be 100% gluten-free, so it may be helpful (be sure to also read the comments section.):

I live in a very small town, we have 2 restaurants and 3 cafes, none of which I go to.  All have gluten.  To travel even to the next town, I carry pre-prepared food with me and of course water. I have downloaded many lists of gluten free food stuffs, medications and skin care so I do not use any gluten.  My doctor put me on iron tablets with Vitamin C and Calicum tablets with Vitamin D, and we checked that these were gluten free.  I don't use any skin care unless it is gluten free, and I have to travel to find this.  I have also downloaded lists of food additives and intolerances so I can re-check everything before I consider purchasing it.  I also have an extensive list of food colourings and dyes in case these are causing problems.  I prepare all my own food in a safe manner and do not share cooking utensils. This is why I don't get it.

 

 

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    • cjjones5969
    • trents
      Welcome to the forum, @cjjones5969! Just out of curiosity, if you had no symptoms, what led to your diagnosis? You may have developed some additional food intolerances which is very common in the celiac community, particularly with foods whose proteins are similar to gluten. Chief suspects are dairy and oats, even gluten free oats. The protein casein in dairy and the protein avenin in oats are similar to gluten. But it can be almost anything. Those two are very common offenders, however.
    • Scott Adams
      Do you eat out in restaurants? This is a common source of contamination. The first step for you would be to re-examine your diet to be sure that it is 100% gluten-free. This article has some detailed information on how to be 100% gluten-free, so it may be helpful (be sure to also read the comments section.):    
    • cjjones5969
      I was diagnosed celiac January 2023, with no symptoms.  I have been on the gluten free diet since, but since the 6th month of the diet to date, I have developed symptoms-stomach pains, bloating, distended stomach, headacres and I am always hungry despite actually eating more.  The dietitican says I'm doing great, my doctor is pleased, but I'm confused.  Shouldn't I be getting better?
    • trents
      Just a heads up. Not every dermatologist is familiar with dermatitis herpetiformis nor knows how to correctly biopsy it. One common mistake made is to take the sample from the pimple instead of next to it. I agree with Scott. Your reaction to gluten is very strong and you putting your health at risk by trying to go forward with a proper gluten challenge. If it looks like a duck, walks like a duck, and quacks like a duck then it's a duck!  I don't know where you live but in some countries (like the UK) there can be government subsidies to offset the cost of buying gluten free food and other benefits for celiacs like follow up care if you have an official diagnosis. At any rate, talk to your doctor about getting the gene test as knitty kitty suggested and getting diagnosed on what info you do have so far. And if the dermatology biopsy is positive for dermatitis herpetiformis that is gold standard proof of celiac disease. But IMO, destroying your health by going forward with the gluten challenge is too big a price to pay in order to get an official diagnosis.
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