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Wasabi

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Wasabi Newbie
Wasabi
Posted

I have been experiencing some severe symptoms for many years & in the last 5 years they have become more serious. I've gone to doctors but they've never tested me for celiac disease but I am beginning to believe that is the problem.

I have the following symptoms:

malabsorption - to spite taking supplementation (the doctors have verified I do have this issue but haven't determined the cause)

insomnia

muscle pain

joint pain

diarrhea (have been treated for IBS)

severe hair loss

general fatigue

mouth lesions (which have improved with B12 shots)

finger nails have many deep Beau's lines particular thumb nails

I have had some testing- intrinsic factor which came back normal. I have one of the genes for MTHFR, I did think that was my problem and have been supplementing with folate & B12 but the hair loss & other symptoms haven't been eliminated although the fatigue is somewhat better. I also have been tested for thyroid & anemia (iron) both came back normal. I also was treated for GERD because the doctor thought the mouth lesions were from acid reflux, the medication made my symptoms worse.

I also had H. Pylori and was treated. I've had IBS for many years and after the H. Pylori was treated it improved but I still have problems with cramping & diarrhea.

My symptoms have been at their worse for the last five years. I was in the Caribbean and came down with a sinus infection. I saw a physician and was treated with a heavy dose of Augmentin which caused me to have severe diarrhea. Afterwards my symptoms worsened. Afterwards I saw a physician (that has a nutritionist in his office) and was given probiotics as well as other supplements.

My symptoms improved for awhile but now I feel very ill again and my hair loss is worse (I've lost about 60% of my hair). The nutritionist suggested that it was possible that my problems were due to celiac disease but I was never tested. I moved across country and now am living in Orange County CA. To be honest I've worn out with seeing doctors and trying to find out what is wrong. Not sure what to do or where to find a physician that can help me. Any advice would be so very much appreciated.

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Lisa Mentor
Lisa
Posted

Hello and Welcome!

Although your symptoms are consistent with Celiac, I would encourage you to continue to seek medical advice.

We can recommend a support group in your area, who can refer you to a qualified physician. Don't give up! ;)

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Wolicki Enthusiast
Wolicki
Posted

I just sent you a PM with some good info :P

Wasabi Newbie
Wasabi
Posted
  • Author

Hello and Welcome!

Although your symptoms are consistent with Celiac, I would encourage you to continue to seek medical advice.

We can recommend a support group in your area, who can refer you to a qualified physician. Don't give up! ;)

Open Original Shared Link

Thank you Lisa! Very much appreciated.. I left out a few symptoms that I thought of after I posted this, I have heart palpitations and I had liver enzymes in my last blood test although I am NOT a drinker or anything close! I'll be seeing a doctor in my area... thanks for encouragement!

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      Iron loss and potential celiac.

      By trents · Posted

      Being as how you are largely asymptomatic, I would certainly advise undertaking a gluten challenge in order to get formal testing for celiac disease. We have many forum participants who become violently ill when they undertake a gluten challenge and they therefore can't carry through with it. That doesn't seem to be the case with you. The reason I think it is important for you to get tested is that many or most people who don't have a formal diagnosis find it difficult to be consistent with the gluten-free diet. They find ways to rationalize that their symptoms are due to something other than celiac disease . . . especially when it becomes socially limiting.  The other factor here is by being inconsistent with the gluten free diet, assuming you do have celiac disease, you are likely causing slow, incremental damage to your gut, even though you are largely asymptomatic. It can take years for that damage to get to the point where it results in spinoff health problems. Concerning genetic testing, it can't be used for diagnosis, at least not definitively. Somewhere between 30 and 40% of the general population will have one or both of the two genes known to be associated with the development of active celiac disease. Yet, only about 1% of the general population will develop active celiac disease. But the genetic testing can be used as a rule out for celiac disease if you don't have either gene. But even so, that doesn't eliminate the possibility of having NCGS (Non Celiac Gluten Sensitivity).
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      By ThomasA55 · Posted

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