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Celiac, Or No?


brandycolwell

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brandycolwell Newbie

hi, im brandy and i am 29. after a bout with the flu, i just never felt all the way better, and then i just woke up one morning with severe muscle weakness in my legs, arms neck, everywhere. went to many doctores, and ended up with a neuro..who may i add said he thought i had wilsons disease, after months, we found out i didnt.so here are all my symptoms, and test results.

weak leg and arm muscles,

muscle spasms bodywide

cramps in my thighs

muscles jerking

ok, so my pcp ran tests and found out im low thyroid, low b12, low folic, low blood sugar, high blood pressure..i have been being treated for 3 months with no change in symptoms at all. im scared, and i am so afraid how long i will be strong enough to take care of my kids. my question is, has anyone had symptoms of this type, oh my, i forgot to add the stomach issues, but they are exact as you read them off of a celiac symptom list....and the brain fog, wow, i hate that...thanks in advance for the time you have taken to read this :)


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Lisa Mentor

hi, im brandy and i am 29. after a bout with the flu, i just never felt all the way better, and then i just woke up one morning with severe muscle weakness in my legs, arms neck, everywhere. went to many doctores, and ended up with a neuro..who may i add said he thought i had wilsons disease, after months, we found out i didnt.so here are all my symptoms, and test results.

weak leg and arm muscles,

muscle spasms bodywide

cramps in my thighs

muscles jerking

ok, so my pcp ran tests and found out im low thyroid, low b12, low folic, low blood sugar, high blood pressure..i have been being treated for 3 months with no change in symptoms at all. im scared, and i am so afraid how long i will be strong enough to take care of my kids. my question is, has anyone had symptoms of this type, oh my, i forgot to add the stomach issues, but they are exact as you read them off of a celiac symptom list....and the brain fog, wow, i hate that...thanks in advance for the time you have taken to read this :)

Hi Brandy and welcome!

Yes many of your symptoms could be Celiac related, although there are more that 200 symptoms and we are all different.

Low Folic and B-12 could be contributing to your brain fog, but you need to find the primary cause of your deficiencies. I would urge you to suggest to your PCP to do a Celiac Blood Panel (all five and I will include a link to that information)

Do you have a family history of intestinal disorders? Celiac Disease is a predisposition disorder, which you can inherit from your parents.

Anyway here is some information on the testing:

Open Original Shared Link

What are the recommended blood tests to diagnose celiac disease?

There is a particular series of blood tests called the ‘Celiac Panel”. These tests measure your immune system’s response to gluten in the food you eat.

tTG-IgA or tissue transglutaminase-IgA

AGA-IgG or Antigliadin IgG

AGA-IgA or Antigliadin IGA

Total IGA

The presence of tTG antibodies is highly suggestive of celiac disease, while AGA can be elevated also in cases of wheat allergy.

(there is an additional test that they are doing now that might be a bit more accurate...will have to find that)

Here it is:

https://www.celiac.com/articles/22080/1/-New-Blood-Tests-Can-Spot-Gluten-Sensitivity-Among-Enteropathy-Patients-Who-Test-Negative-for-AntiTissue-Transglutaminase/Page1.html

Kim69 Apprentice

Hi there! A gastroscopy is also something you could get done to get a diagnosis of Coeliac disease. That's what I had done because my dr basically had no idea what was wrong with me so we did almost every diagnostic test imaginable!

I think its worth getting a proper diagnosis, probably starting with the blood test. If you are diagnosed you will get ready access to future vaccines/trials etc. Plus I think it's important to know because then you know a small amount of gluten can harm you - you are more likely to take your diet very seriously.

I am 42 yo. I was diagnosed 1 yr ago presenting with abdominal pain, fatigue, brain fog, diarrhea, anemia. After diagnosis I had further testing and found I also have osteopenia and vit d and zinc deficiency.

Also consider fructose malabsorption. I have that too. Onions cause real bad pain!

Good luck and keep us posted!

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      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
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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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