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My Symptoms And Help?


Megara7

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Megara7 Newbie

I swear my doctors think I'm just a hypochondriac--I know my father-in-law does because he says so--but I've been struggling with various symptoms for years, and then this summer much more severe symptoms. My symptoms:

GERD

shortness of breath (I just can't take deep breaths sometimes)

irritable bowel syndrome

very low vitamin D, vitamin B12, and somewhat low other vitamins, low iron

very low progesterone and DHEA and testosterone (helped with supplementation through a specialist)

depression, irritability, terrible PMS, anxiety attacks

A year and a half ago, I started having problems with an irregular heartbeat--almost constant. I was diagnosed with mitral valve prolapse after an ER visit, but beta blockers didn't help.

This summer, I started having worse problems. My back muscles have been so tight that I was in constant pain, some days much worse than others. No reason was really found for this. I've had brain fog and headaches and can't remember appointments, have to write everything down. Also, neurological symptoms--tingling legs, buzzing through all my muscles like they are vibrating although you can't see anything. I've always had the occasional (every 3-4 years) attack of costochondritis in my left ribs, but now I have mild to moderate pain in my ribs there all of the time and one rib is more prominent. My doctor is now sending me for testing for multiple sclerosis, a tumor under my ribs although he can't feel anything there and I told him I've always had some issues with my ribs there, and is considering fibromyalgia, chronic fatigue, etc.

Two close friends have recently been diagnosed with celiac disease. These are two friends I've commiserated with because we have many similar symptoms. They are following a gluten-free diet and recommended I just try it. For a week and a half I've done so and I've felt so much better! I can concentrate and my head feels so clear, I haven't had any anxiety attacks, my heartbeat is regular (progesterone supplementation helped this tremendously anyway), and I can breathe! I mean I can take DEEP breaths and feellike I'm getting enough oxygen! My stomach doesn't hurt and although I've still had tingling, it is not as intense.

I'd like to actually be tested, but I see that you shouldn't do the diet before being tested? The thing is, I don't want to go OFF of the diet and have the return of those symptoms! Is there anything else I can do?


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Dixiebell Contributor

Hi! Welcome! No, you need to be consuming about 3 to 4 slices of regular bread a day for the tests but there is always the chance that the tests would be negative anyway. The blood tests are not 100%. If you have been checked for everything that could be wrong and you are feeling better gluten free, why not stay gluten free. I have heard of some docs giving a diagnosis based on response to the diet. Also, have the docs checked your thyroid?

WheatChef Apprentice

Yeah, you're going to have to decide on whether you want the tests done or want to avoid going back on the gluten. If you do want the tests done, contact your doctor to set up the testing and get started on the challenge as dixiebell said. If you react poorly to this reintroduction contact your doctor asap about the change in symptoms, sometimes the reintroduction of symptoms is all the affirmation that people need. I know that I get anxiety whenever I accidentally end up eating gluten, the aversion to going back into that state of mind for any extended amount of time is way more powerful than any doctor's diagnosis ever could have been for me.

Megara7 Newbie

Well, at this point, I'm just going to continue the gluten-free diet. It has helped me so much! I have had my thyroid checked and, at different times, I've had different results. About 6 years ago, I had some cysts in my thyroid and had thyroid radioactive scans that suggested hypERthyroidism, but all of my lab results were normal. Then, 3 years ago, I had a pretty low T3 and took Cytomel. I didn't notice any difference taking it. Then I was told to stop taking it because my T3 was higher but my T4 was low? I was tested again after being off several months and all my levels are in the normal range. So....

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    • trents
      Yes, it does. And joint pain is another celiac symptom that is now well-recognized. 
    • ThomasA55
      Does my iron loss sound like celiac to you?
    • trents
      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).
    • ThomasA55
    • trents
      Welcome to the celiac.com community, @ThomasA55! Before I give my opinion on your question about whether or not you should undergo a gluten challenge, I would like to know how you react when you get a good dose of gluten? Are you largely asymptomatic or do you experience significant illness such as nausea and diarrhea? You mentioned intermittent joint pain before you began experimenting with a low gluten diet. Anything else?
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