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I Think I Am Losing My Mind!

michellern

By michellern
in Coping with Celiac Disease

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michellern Rookie
michellern
Posted

Ok. I thought that I was sane, but now I am beginning to wonder!

I was tested for celiac 2 years ago, right after my brother was diagnosed with celiac. At that time, I just began treatment for rheumatoid arthritis, fibromyalgia and Sjogren's syndrome. My rheumatologist suggested I have an endoscopy with a biopsy for celiac disease. I did. When I returned for my follow-up,the GI doc told me that I was negative for celiac disease. So I went about my business.

I continued treatment for the autoimmune diseases and was hospitalized several times in the past two years for what they thought was a heart condition, anxiety disorder, gastritis, and I think hypohondria~in their eyes.

I became very ill in June and they finally decided that my gallbladder was not functioning due to the abnormal HIDA scan. So I had it removed on June 22, only to be sicker than I was before the surgey. I could not eat due to nausea and severe bloating. I went back to the GI due to the surgeon said that this was not related to the surgery.

When I entered the same GI practice that I saw 2 years ago, doc says, "So, are you hear because of your celiac? Is it acting up? I said, "Excuse me????" He said that I had celiac disease. My bloodwork was very positive 2 years ago, but my biopsy was negative. He believes that If the bloodwork is positive, you are positive. The biopsy could be negative for many reasons. So I have a repeat scope and biopsy that yielded the same results!

I have been gluten-free for almost 3 weeks now. I keep a daily food diary to track symptoms associated with food. Some of my symptoms seem to be disappearing, but it seems that I feel good for a few days and then yucky for a few days. Is this normal until my body adjusts to the gluten-free diet? I am very careful. I am lucky to have my brother for help with foods and choices. He has been great! So I don't think it's the food I'm eating.

Or am I losing my mind??? Help!!!!

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mushroom Proficient
mushroom
Posted

No, you are definitely not losing your mind, but after what you have been through it would not be surprising if you were :unsure: It is unconscionable that they did not tell you two years ago that your blood work was positive for celiac disease. Many people test positive on blood work and negative on biopsy. Most doctors will tell you to try to the gluten free diet if your blood work is positive because of this. Some will tell you to try it even if you are having symptoms of celiac disease and no positive tests.

Anyway, what is done is done. Now to get back to the present. In the time span of healing from celiac disease, three weeks is a very short time indeed. You must try to be more patient. :) You have spent a lot time acquiring whatever damage you have, and just turning off the gluten switch will not give you instant recovery. You are lucky to have your brother helping you with adjusting to being gluten free and I am sure he will tell you that you will have ups and downs along the way, even if you are not accidentally ingesting gluten, before you are recovered. You should expect it to take you a minimum of six months to be fully recovered; for some people it can take up to two years. Has your GI doc tested you for nutrient deficiencies, because normally celiacs have not been properly absorbing nutrients and need supplementation at least until they are healed, sometimes longer. Ask him to test you in particular for vitamins D, B12, folate, potassium, magnesium, ferritin, calcium; also ask for a thyroid test.

Just hang in there; you should be feeling much better in a few weeks. :)

missceliac2010 Apprentice
missceliac2010
Posted

Hello there,

I am so sorry to hear about the h-e-double-hockey-sticks you've been through! I have a very similar story. Problems, problems, HIDA scan, gall bladder out, never got results of the first biopsies, hospitalized again, asked if I had been gluten-free because I was borderline last time, said no, never knew that... blah blah. UGH! SO annoying! And in the end, my second biopsy was still "borderline" for Celiac and my blood work was negative. My doc still diagnosed me with Celiac because of a strong positive response to the gluten-free diet.

I can tell you that Mushroom is right...it takes time. It took time to do the damage, and it's gonna take time to heal it. I have good days and bad. And at first, I thought I was being so careful, but then little things started to pop up that made me realize I was glutening myself. I didn't get a new toaster, I was still using old bakeware, etc... Knit-pick your routine and diet. Look for "oopsies"! But even with me eliminating my oopsies, I still have a bit of a roller coaster ride when it comes to my GI health going on. I am holding tight to the "it takes time" theory too. Stay strong!

julandjo Explorer
julandjo
Posted

Recovery has definitely been bumpy for me. A few good days sprinkled among uncomfortable ones. My thing is that new food intolerances keep cropping up. Just a few days ago I determined that although I'm soy-free, my omega supplement has soy lecithin in it. I always thought I was okay with lecithin, but after a trial I realize I'm very much not okay with it. I get chest pain, anxiety, etc. And of course my body is missing the omega so I'm constipated. :( AND, my one indulgence is dairy-free dark chocolate, but guess what? It contains soy lecithin. So now that's out too. Ugh. This has been quite an experience and I too am clinging tightly to the hope that over time I'll be feeling better and better. Hang in there!

michellern Rookie
michellern
Posted
  • Author

Thanks for all of your support and kind words. They give me HOPE!

This forum is great! I don't feel so alone anymore! :D

Aphreal Contributor
Aphreal
Posted

I am about a month in. I too have good days bad days. learning what has gluten in it and what doesn't but its hard! Sometimes it seems everything makes me sick then I have a great day eating the same thing I mean really!

We will get there!!

jodi2010 Rookie
jodi2010
Posted

ARghh!! i feel so bad for you, not only because you went throught sooo much, but i think many of us were missed diagnosed for a long time..i too went through all the symptoms, many doctors, many differnt "guesses" of what was wrong..IBS,maybe chohns, depression,panic attacks, hormonal, maybe thryoid..gallbladder came out too..but then finally the right one:)...and although it has only been about 8 months into, finally, the right diagnosis i have improved sooo very much.. i still have days once in a while that i feel bad. But i do think that it takes a long time for our bodies to heal and there is gluten "hidden" in so many products that you have to be really careful. But the good news is that you are on the road to recovery and although it may take a while, you will see improvements all the time. Good luck to you and feel better:)

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