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Recently Diagnosed....several Questions.

hlwilliams

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hlwilliams Newbie
hlwilliams
Posted

Hello,

First, I'd like to thank everyone on here, shortly before my diagnosis through now this forum has been an invaluable resource, especially because I feel like I am having a very hard time getting information anywhere else! I have several questions I was hoping you all could help me with.

Here is my backstory: I have had stomach issues of every kind since I was 17 (I am 24 now). At first, thought I was having issues with pork, was tested for food allergies and tested as slightly positive for an allergy to it. From there, I continued having stomach problems and began having headaches frequently. Went back to allergist who said it must be IBS. I attributed all my stomach issues to that for the last 7 years. Over the last year, things picked up in intensity and I started having neurological problems,(numbness, tingling, balance problems) and was afraid I had Multiple Sclerosis like my mother, went through all kinds of testing for that and they ruled out "everything else" but said it could be MS. I started having problems with not having any energy. Then the migraines became very severe. My doctor wanted me to keep a food journal and see if i could find any triggers. I noticed that dairy seemed to be a problem so i went dairy free then tried some ice cream and got very sick. Which confirmed a dairy problem to me at first. Then i noticed I was still having symptoms. At the point my husband discovered Celiac disease online and everything clicked to us that it made perfect sense. He was switching jobs at the time and we had a brief lapse in insurance so I decided to go ahead and try a gluten free diet to see if it helped. It helped immensely! I noticed results the first few days! I felt better than I could remember feeling! Went to the doctor after 6 weeks of mostly gluten free diet and had a blood test. In the mail I received the results, a weak positive. The doctor told me I could consult with a gastroenterolygist. (sp?) I went to that doctor who said a biopsy was not necessary because it would only confirm what we already know.

Here are my questions:

1. Shouldn't there be some kind of more follow up? From what I've read, maybe I should at least have my vitamin levels checked? How do I find a doctor to do this? I was not happy with getting my results in the mail and no follow up or chance to ask questions.

2. I've been without gluten (unless something was cross contaminated) for 3 months now and still have a low energy level. Is that common?

3. How important is a biopsy other than for diagnosis?

4. My husband and I would like to start trying for a baby in the fall, and I know that celiac can cause some problems with that. How long after going gluten free did it take you to concieve?

Any other advice for a newbie is appreciated :) I am very fortunate to have a supportive husband going gluten free with me.

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Astrid1986 Newbie
Astrid1986
Posted

I don't have answers to most of your questions, b ut I do feel that if you've had problems for so long, you should indeed get your vitamin levels checked. Celiac can cause malabsorption problems with all kinds of vitamins and minerals, and you still have low energy. One of theh first things they tested me for when I complained of low energy, was iron (which is deficient in anemia), but I now hav elow B12 (can be caused by Celiac), and I believe other vitamins/minerals should be tested oto. You can ask your GP to do this and follow up with them.

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