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How Bad Does It Get?


Pyro

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Pyro Enthusiast

Does it ever get so bad you feel like you're dying?

Right now I'm having:

-I can no longer feel, and can barely use my hands.

-Mood swings. Usually anger.

-Upper back hurts like it needs to be cracked.

-Stomach hurts.

-Ball in pit of stomach.

-Constipation

-Hard time focusing.

-Forgetting a lot.

-Sometimes my vision will completely blur

-Dizzy/losing balance

-Extremely irritable

-Nausea

It's really hard to funcion and I feel like I could just close my eyes and die if I wanted. I would go to a doctor's if I thought they could actually help.


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ravenwoodglass Mentor

Pyro before I was diagnosed I was so bad that my DD told me the family would understand if I committed suicide. I was in so much mental and physical pain that at times I wished I was gone. I am so glad I am still here. Yes it can get bad but it can also get better. I do hope you will get on the diet as soon as you can. The world will seem such a different place. We are here for you and many of us have been in your shoes. Don't lose hope.

((((((((Hugs)))))))))

Lisa Mentor

It really helped me tremendously by taking some B-12 shots and later some sublingual (dissolved under your tongue) B-12. My memory, balance and focus improved quite a bit.

If you have not already done so, ask for a metabolic blood test which will show is you have any mineral or vitamin deficiencies. When your numbers are off, it can make you feel really bad and can make worse any depression you may have.

And please, make sure that you are totally gluten free and setting yourself up for traps. Gluten can hide everywhere.

It does get better with diligence and some time. We have all been there.

Pyro Enthusiast

Oh man... Here's what I posted on another board:

So after either burning out on amphetamine, burning out from exam anxiety, becoming malnourished from celiac disease, or some combination of the above I decided to take a week off from the gym and my diet. Instead of eating really healthy, I've just been focusing on getting lots of nutrients in from less savory sources and snacking on gluten free carbs to soothe my anxious soul.

Well now my stomach is horrificly distended and hurts, but not as bad as it hurts like when I'm glutened. So something else is up this time, but it ****ing SUUUUCKS! Dear lord it is not a nice thing to experience. And I'm retaining water like it's my job. darned... What should I do? I really don't know what to do now. It's really ballooning out and causing indirect discomfort.

ravenwoodglass Mentor

First take some pepto bismal, that may help a great deal. You mention snacking on lots of gluten free carbs that is not always a real good idea at first. For one thing many are loaded with things that your system may not be used to and some are high in other stuff that you may very well have a problem with. Especially in the early stages your gut is in pretty rough shape, you need to baby it.

For snacks go with fresh or for sure gluten-free tinned fruits, make up a bag with your favorite dried fruits, nuts and seeds like walnuts, almonds, pecans, sunflower seeds, pumpkin seeds etc. and add some gluten-free chocotale chips and maybe a few gluten-free pretzels.

You also may be not digesting dairy right now so make sure you are doing okay with it or cut it out altogether for a bit.

For meals go with plain fish, chicken, meats etc cooked, cooked veggies (your system may not handle too many raw right now, and rice.

It can take some time to heal and I know how hard it is at first when things are so up and down. Hang in there.

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    • Scott Adams
      Based on what you've described, it is absolutely crucial that you pursue further medical exams for Celiac Disease and related conditions with a gastroenterologist. Your symptoms—especially the worsening fatigue, loss of muscle mass, neurological symptoms like migraines, and palpitations, coupled with being underweight—are significant red flags that extend beyond typical IBS. The negative home test is not reliable, particularly given your concern about sample contamination and the fact that you were likely not consuming sufficient gluten at the time for the test to be accurate, which is a common issue. While probiotics like Bifidobacterium Infantis can support gut health, they cannot resolve an autoimmune response to gluten or heal intestinal damage caused by Celiac Disease. Your declining blood test results, even if still "in range," further indicate a trend that needs a doctor's investigation. Please do not hesitate to seek a specialist; a formal diagnosis is the first step toward getting the correct treatment, allowing your body to heal, and finally addressing your weight and overall health concerns. This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease. One test that always needs to be done is the IgA Levels/Deficiency Test (often called "Total IGA") because some people are naturally IGA deficient, and if this is the case, then certain blood tests for celiac disease might be false-negative, and other types of tests need to be done to make an accurate diagnosis. The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate.    
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      I would only add that cross contamination with wheat may still be a possibility, so it's still best to seek out buckwheat that is labeled "gluten-free."
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