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Struggling

Sneaker
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Sneaker Newbie
Sneaker
Posted

Body gets inflammation, stiff, weak, lost a lot of weight, not vomiting or having to go to the bathroom from celiac even though eating whole foods and gluten free now

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trents Grand Master
trents
Posted

Welcome to the forum, Sneaker!

Have you been officially diagnosed with either celiac disease or NCGS (Non Celiac Gluten Sensitivity)? The brevity of your post allows me to read it two different ways. Are you saying that your only symptoms are inflammation, weakness and weight loss? Or, are you saying you also have vomiting and diarrhea but it is not from celiac disease? Could you clarify, please?

Sneaker Newbie
Sneaker
Posted
  • Author

I haven’t been officially diagnosed because I haven’t seen the gastroenterologist yet but the blood test says I’m 90% likely, I also got diagnosed with pre diabetes in late December, so I changed my diet and haven’t been able to eat much carbs, my symptoms are the inflammation, stiffness, weakness and weight loss, but haven’t had any of the vomiting or diarrhea, it’s starting to affect my mental health, possible anxiety and depression

trents Grand Master
trents
Posted

Several things:

1. Many celiacs do not experience vomiting and diarrhea. Having definite GI symptoms if you have celiac disease is a common misconception, even within the medical community, I'm afraid. We call them "silent celiacs" if they don't present with GI distress.

2. You should not be starting on a gluten free diet if you will have more testing done. Going gluten free now will likely sabotage any further testing such as an endoscopy with biopsy. According to the Mayo Clinic guidelines, you should be eating two slices of wheat bread daily (or the gluten equivalent) for 6-8 weeks leading up to the endoscopy/biopsy, which is considered to be the gold standard for diagnosing celiac disease. A gastroenterologist will likely want to do this.

3. You should be feeling better by now if you have been eating truly gluten free since December. You may have some other medical problem in addition to celiac disease.

4. You may have developed an intolerance to other foods besides ones containing gluten. It is common for celiacs to develop intolerance to dairy, oats and even eggs, just to mention some possibilities.

captaincrab55 Collaborator
captaincrab55
Posted
53 minutes ago, Sneaker said:

Body gets inflammation, stiff, weak, lost a lot of weight, not vomiting or having to go to the bathroom from celiac even though eating whole foods and gluten free now

Sneaker,  What kind of inflammation?

 

Sneaker Newbie
Sneaker
Posted
  • Author

The doctor in emergency recently said go ahead and eat gluten free, it would be different if it had been a year or 6 months since you had gluten, I’ve just been gluten free for a week, I wasn’t eating much carbs before that and usually gluten free bread with peanut butter, now gluten free cereal, I was getting blood sugar spikes a couple months ago, but now more now like a flushing and head pressure and tightness, body stiffening

Sneaker Newbie
Sneaker
Posted
  • Author

The doctor said I was likely celiac in early February after a blood test, my blood sugar is way down after changing my diet,  I get the A1C test in early April, I’m hoping it’s way down as well

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trents Grand Master
trents
Posted

The emergency room doctor gave you advice for the immediate problems he was dealing with but if you continue to eat gluten free you will invalidate the upcomming tests the GI doc will likely do, as I have explained already. If you have only been eating gluten free for a week that is not enough time to expect to feel better. Still, if you possibly can, go back to eating gluten until your upcomming tests with the GI doc are done.

trents Grand Master
trents
Posted

There is also the option of going all in for eating gluten free now and see if your health improves. If you do improve, you have your answer and you don't need further testing. To continue to eat gluten if it is ruining your health is not worth getting more testing done. You will have to decide for yourself. The link below might be helpful as most people don't realize the many, many ways gluten finds its way into our diet. It's easy to achieve a lower gluten diet but to totally eliminate it is much harder.

 

Sneaker Newbie
Sneaker
Posted
  • Author

Ok thanks, I read the article

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      I have seen this problem many times. I always get in touch with the company. Most times they tell me if I'm just gluten free it is ok, but do not eat it if you are celiac. Calling the company is the best way when you are not sure. Yesterday I had a different example of products being marked gluten-free.  I love chocolate and have a piece each day. The chocolate bar I like is Chocolove. When I bought one this week it was not marked gluten-free. I called the company to find out why and if it was still gluten-free.  Turns out the manufacturer decided there was too much on the wrapper and took off the gluten-free label. It is made in a dedicated gluten-free facility. 
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    • trents
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      By trents · Posted

      So, is their reasoning for doing another biopsy after you've been gluten free for awhile to get a comparison of before and after? In other words, there should be healing of the SB lining if you go gluten free for awhile if you have celiac disease?
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      By trents · Posted

      Welcome to the forum, @Tazzy11! Yes, your DGP-IGG test is positive. It means you could have celiac disease. But there are other possible causes for an elevated DGP-IGG count. I note that your TTG-IGA was not positive. The TTG-IGA is considered the chief celiac antibody test and a bit more reliable than the DGP-IGG. But let me ask you an important question. Prior to the blood draw, had you already begun to limit your intake of gluten? Also, were these the only two tests ordered to check for celiac disease? A physician should always order what we call the "total IGA" test (it goes by other names as well) to check for IGA deficiency. If you are IGA deficient, the scores for individual IGA celiac antibody tests, such as the TTG-IGA will be falsely low. By the way you spelled "coeliac" I judge you must be in the UK. There are several other antibody tests that can ordered when checking for celiac disease in order to get a more complete picture. Here is an article outlining the various tests:  
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