Struggling

[Sneaker]

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

[trents]

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]

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]

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]

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]

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]

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

[trents]

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]

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]

Ok thanks, I read the article