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Help...too Much Going On


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I am feeling very, very overwhelmed. I have been gluten-free for over a year, as well as dairy and egg-free, and I am extremely vigilant about my diet. However, I am having stomach aches at least every other day, and I am so fatigued that I could just sleep for days...in fact, I find that I start a project and then just sit on my bed for hours. I don't know who to see. I saw another gastoenterologist recently and he ran a CBC and basic blood panel on me, plus a celiac disease blood workup (his response was, "what do you think we should do? Can you afford to have me scope you to check for cancer?". And I specifically asked him, will the blood test be accurate for celiac disease since, one, it costs $300 and I have no insurance, and two, the last test I had was negative, and three, I understand that if you've been off gluten, it will not be correct. As expected, it came back negative. However, my CBC was off the charts - I've had ITP for years, so it was not a shock, but it still very worrisome: platelets 37k, WBC 3, Hemo 33.4. He immediately passed me back to my hematologist, who had done a bone marrow aspiration last year - and told me to have a liver and spleen ultrasound once again. I am also going to see a nutritionist next week but frankly, don't expect much - she is not well-versed in gluten intolerance or celiac disease. I've been having a hard time keeping my weight up. I am 53 and over the years have dealt with depression, anemia, thinness, rashes, headaches, stomachaches, bruising & pettechia, brain fog, clumsiness, difficulty conceiving (and a miscarriage), early onset menopause, and very dark circles under my eyes. In addition, I have asthma and allergies (both food and environmental). I've also had 2 right breast lumpectomies (benign) and my current mammo shows 5 "suspicious spots" on my left breast.

I am at my wit's end. WHO do I see??? I wonder if I should try someone in the homeopathic realm instead of "normal" doctors (who have been of no help whatsover). I don't know which way to turn. I hope someone can give me some advice or reassurance, or recommend a good doctor in the Gainesville, FL area (I had asked for recommendations on the "doctor" forum, but the one who was recommended has not been of any help).

Thank you in advance.


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Lisa Mentor

I am sorry that you are going thought such difficulties. Most of us are not doctors, and I would encourage your to continue in your search with medical professionals.

It's not necessary for a doctor to recommend the gluten free diet. It might be something that you might want to try to see if you can get some relief.

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widget Newbie

Thanks for your response. Yes, I've been gluten-free for almost 2 years - I eat organically as much as possible, and avoid all processed foods. I also have to avoid all dairy, eggs, nuts, citrus, melon, turkey, corn and more. I have asked 2 different doctors to prescribe a comprehensive food allergy panel and they both said they wouldn't - so I will need to find an allergist in addition to everyone else...more money, of course, which is one reason I need to figure out who can help me the most and actually understand the correlation of celiac disease, ITP, etc. and not treat just one symptom.

I feel like I can't eat without reacting, can't sleep without a sleeping aid, and feel like crap every single day. I jog but it makes me cough (I cough all the time, actually), I try to take care of myself and avoid stress, and I attempt to research/read everything I can - this site has been very helpful..if nothing else, just to know that I'm not alone!

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    • N00dnutt
      @Knitty_Kitty Noted with appreciation.
    • trents
      @N00dnutt, as OP explained earlier, she had a gastroscopy done earlier while she had been eating plenty of gluten for months. It was negative despite strong positive antibody scores.
    • N00dnutt
      The best way to determine positively is to undergo a Gastroscope. Your Endocrinologist will assess the condition of your "Villi". These tenticles are what extract the nutrient from what we ingest. The Protein in Gluten is like acid to these tenticles.
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