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Kind Of Scared To See My Dr. Tomorrow


DElizabethE

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DElizabethE Apprentice

Hi,

As my Dr's app't gets closer I am kind of scared to see him. I'm not really sure why though...maybe because I've lost my faith in Dr's. My pain started over 14 months ago and I am still in pain. So 5 months gluten free and I know there's more to my problem (I am super careful especially with cc). I also see a ob/gyn specialist in a couple of weeks. Really tired of the pain and the ER. They know me very well up there but no one will help me.

Last May I weighed 128. By the time I was diagnosed I was 107...the other day I weighed in at 98, and I'm only 5'5". My last bloodwork had my levels going down and I hope things are back to normal. I also have no dairy, corn, soy or eggs. When the pain is really bad I feel as though I'm dying. I guess I'm scared he won't be any help or care or there's something seriously wrong. Just had to vent for a few minutes. Thanks for listening.

Diane


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Mtndog Collaborator
Hi,

As my Dr's app't gets closer I am kind of scared to see him. I'm not really sure why though...maybe because I've lost my faith in Dr's. My pain started over 14 months ago and I am still in pain. So 5 months gluten free and I know there's more to my problem (I am super careful especially with cc). I also see a ob/gyn specialist in a couple of weeks. Really tired of the pain and the ER. They know me very well up there but no one will help me.

Last May I weighed 128. By the time I was diagnosed I was 107...the other day I weighed in at 98, and I'm only 5'5". My last bloodwork had my levels going down and I hope things are back to normal. I also have no dairy, corn, soy or eggs. When the pain is really bad I feel as though I'm dying. I guess I'm scared he won't be any help or care or there's something seriously wrong. Just had to vent for a few minutes. Thanks for listening.

Diane

Hi Diane- Hang in there. The fact that you are losing so much weight (i'm the same height and the lowest I ever got down to was 119 and I looked like a skeleton) still should be big red flag. When I lost the weight I did they ran every test known to mankind on me just to rile other things out (I was tested for AIDS :o and lymphoma; tuberculosis and hepatitis). At least I know now that i don't have ANY of those.

Plus, most people seem to be in agreement that it really does take a long time to heal. :( I know that's not good news but if your bloodwork is going down that's a GOOD sign. I can honestly say that at first I noticed a HUGE difference but that lasted about a month and then I still didn't feel too hot for the rest of the first year.

The second year was much much better! I've got something going on now but as far as Celiac goes, my gut is much better. Make sure they test your thyroid and DEFINITELY ask why you are still losing weight.

It is scary, but this is a good place to VENT. Hugs, B

DElizabethE Apprentice
Hi Diane- Hang in there. The fact that you are losing so much weight (i'm the same height and the lowest I ever got down to was 119 and I looked like a skeleton) still should be big red flag. When I lost the weight I did they ran every test known to mankind on me just to rile other things out (I was tested for AIDS :o and lymphoma; tuberculosis and hepatitis). At least I know now that i don't have ANY of those.

Plus, most people seem to be in agreement that it really does take a long time to heal. :( I know that's not good news but if your bloodwork is going down that's a GOOD sign. I can honestly say that at first I noticed a HUGE difference but that lasted about a month and then I still didn't feel too hot for the rest of the first year.

The second year was much much better! I've got something going on now but as far as Celiac goes, my gut is much better. Make sure they test your thyroid and DEFINITELY ask why you are still losing weight.

It is scary, but this is a good place to VENT. Hugs, B

Thanks B,

I am thankful that my Dr. finally diagnosed the celiac. Quicker than some people have it. And I really don't mind the gluten free diet. Just trying to make the most of it and how to cook healthier for me and my kids. Now the next part they need to figure out. I'm seeing an ob/gyn specialist in a couple of weeks to see if there's something there. I'm very tired of the ER and they know just give me an IV of demerol and send me home.

It's been affecting my job to the point it was in jeopardy. I have the perfect job at my 2 daughter's school working in the Special Ed dept. Most days I have to go in no matter how I feel.

I'm hoping my bloodwork is still improving or normal. Let's see if I can get this right...my IgG was 37 in Oct., down to 22 in Jan. My IgA 165 down to 48 and the tissue was 162 down to 84. Wish me luck tomorrow and thanks again.

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    • Scott Adams
      After years of stable management, developing new symptoms to historically safe foods like nuts and fish strongly suggests a secondary issue has developed. It is highly unlikely to be a new gluten issue if the foods themselves are certified gluten-free. The most probable explanations are a new, separate food intolerance (perhaps to a specific protein in certain nuts or fish) or a true IgE-mediated food allergy, which can develop at any age. The symptoms you describe—cramps and the urge to vomit—can be consistent with either. It is crucial he sees an allergist for proper testing (like a skin prick or blood test) to identify the specific culprit and rule out a serious allergy, as reactions can sometimes worsen with repeated exposure.
    • trents
      Nuts are a common source of food allergy reaction/intolerance/sensitivity. But fish usually not. Of course, intolerances can develop to any food, whether or not they are common ones. I'm at a loss here.
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      Your doctor's recommendation to wait three months is very sound and aligns with general advice for celiac disease. While the acute GI symptoms resolve quickly, the autoimmune response and intestinal inflammation can linger, impairing nutrient absorption crucial for early fetal development. This three-month window allows your body to calm the immune response and for your gut to fully heal, ensuring you are in the best possible nutritional health for conception and pregnancy. In the meantime, focus on hydrating, eating nourishing, easily digestible foods, and resting—your body needs time to recover. It's a frustrating delay, but it's the best step for a healthy pregnancy.
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      Welcome to the forum, @Celiacpartner! Does this happen with all nuts and all fish or just certain kinds? And are we talking about products that are advertised as gluten-free eaten at home or things served in a restaurant?
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