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Need Some Hope....


rosekligerman

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rosekligerman Newbie

Hello Everyone,

Thank you for taking the time to read this...

I've been sick for 6 years and counting. Yet, no doctor I have seen can figure out why I am so unwell.

I experience the following symptoms...all day long:

- Extreme Acid Reflux ( all day 24/7)

- Extreme Nausea

- Abdominal distention ( I look like I am 5 months pregnant, and I am small)

- Irregular stools

- Constipation

- Occasional diarrhea

- Vomiting

- Rhumenation

- Oily stools

- Debilitating fatigue

- Muscle aches, pains etc.

- Weakness

- Headaches

- Extreme irritability and mood swings

- Depression

- Anger

- previous hypopituitarism treated with hormones

- lack of menstruation

- high B12 level in blood, but not taking supplements

- low iron, previous anemia

- insomnia

- over sleeping, cant wake up

- UTIs

- delayed gastric emptying

- dry itchy skin

- so damn tired all the time

- feel like i have the flu all the time

- peripheral neuropathy

- the list goes on....and on...

Additionally, I have had every test imaginable to test stomach issues, all basically in conclusive.I am being re-tested for celiac disease for the 3 rd time. I wasnt eating gluten the first time I was tested. and the second time I was not eating much at all, and puking up most if not all of it. I am also trying to do a Gluten Challenge for 2 months before I get retested. Are there other ways of being tested for celiac disease other than the traditional biopsy and blood?

Thank you for taking the time to respond....

Rebecca


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sandsurfgirl Collaborator

I am so sorry you are so sick. Have you tried a gluten free diet yet or are you just starting? I got diagnosed a week ago and I've been feeling bad all week. People have told me it's gluten withdrawals. From what I've read lots of people came up negative on the tests but when they did the diet 100% and got ALL gluten out of their diet they felt better within a couple of weeks.

rosekligerman Newbie

I am so sorry you are so sick. Have you tried a gluten free diet yet or are you just starting? I got diagnosed a week ago and I've been feeling bad all week. People have told me it's gluten withdrawals. From what I've read lots of people came up negative on the tests but when they did the diet 100% and got ALL gluten out of their diet they felt better within a couple of weeks.

Hey Sandsurfgirl...

Thanks for the reply. How were you diagnosed? If you dont mind me asking. I feel really set on getting a diagnosis, which is why I am taking the gluten challenge. I am on day 5 and I am feeling horrible.i just want a diagnosis. I am so frustrated.

REbecca

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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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