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Frustrated - Tired Of Being Dismissed. Waiting On Biopsy Results.


Maoftrips

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Maoftrips Newbie

A little history...I am 39 years old. I've had belly issues for as long as I can remember. I was diagnosed with irritable bowel syndrome in my early 20's.

My symptoms:

Nausea (I don't always feel awful, but I never feel good. This is daily. Something I unfortunately considered normal for me. It's all I've known for over 20-25 years).

Abdominal cramping

Constipation and diarrhea (less C and more D)

Stool contains a lot of mucous, floats (fatty stool?)

Frequent headaches

Fatigue/sleepiness

Numb/tingly hands and feet (most intense after eating)

Brain fog (feels like "medicine head")

I had my gallbladder removed three years ago. I have another autoimmune disorder that caused six miscarriages (I now am the mom to three nine year olds as a result of INVITRO. They administered IVIG and heparin to sustain pregnancy).

My numb/tingly hands started just a few months before I had my gallbladder removed. I saw a doctor at that time to discuss the numbness (I had an MRI to rule out MS and stroke, bloodwork and EKG to rule out heart issues). When that came out all normal, he said he didn't know what else could be causing it. He said the fatigue was due to being the mom of three kids. This kind of ticked me off. I get that it's tiring, but there is a difference between being exhausted from life, and SLEEPY all the time. My headaches he attributed to three children as well. Sigh. My constipation and diarrhea due to ibs, and for my nausea, suggested I give up dairy to see if I was possibly lactose intolerant. I gave it up for about two weeks. No change. Perhaps I didn't give it long enough.

I was so happy to have MS ruled out, I let it go. I blame myself for not being proactive in getting to the bottom of what was wrong with me. Nausea and these weird numb hands and feet were my new normal. I'm not the person I used to be. I used to be fun, cheerful. I feel like I'm just this lump of grumpy because I never feel good. I guess I could add irritability as a symptom, but I feel of course I'm irritable, I feel like crap!

Zoom to now. I've gained 30 pounds the past two years. I can't lose weight. No matter what I eat, how much I exercise, the scale doesn't move. If it does, it moves up. I was playing around online seeing what I could do, and why I wasn't losing. It kept leading me to gluten and celiac. I read the symptoms...nausea, headaches, etc are symptoms to almost all ailments it seems. Then I got to the numbness and miscarriages...and a lightbulb went off.

I saw a new doc :). She said it could be thyroid, vitamin B deficiency, or celiac. Thyroid and VB came back normal. She did one blood test for celiac (iGa?). It came back negative, but she said it is not uncommon for false negatives, so she recommend I go in for a biopsy to confirm or rule it out. I had my biopsy this morning. I'm frustrated because the GI doc seemed totally aggravated that I was having a biopsy done. He said that since my bloodwork came back negative, I do NOT have celiac. He said the numbness has nothing to do with celiac...unless of course I was malnourished, which I didn't appear to be (yes, I am overweight), and my bloodwork didn't reflect that.

He said when it comes back negative (not if, when), we can meet again to look into getting meds to help with my IBS. Good news is that even though he gave me attitude, he did perform the biopsy. I should get results early next week. I told him that if it turns out negative, I still plan to eliminate gluten to see if that helps rid me of my symptoms. He looked at me like I was out of my kind and said dryly, "if you don't have celiac, you don't have problems with gluten." Fine. Whatever. I didn't argue with him. What does it hurt to try? I'm happy I got my biopsy. I'm hoping it gives me answers.

If any of this sounds like your experience. If you could give me any advice. I really appreciate it!


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      Celiac disease is the most likely cause, but here are articles about the other possible causes:    
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      Please read: https://www.fda.gov/news-events/press-announcements/fda-takes-steps-improve-gluten-ingredient-disclosure-foods?fbclid=IwY2xjawPeXhJleHRuA2FlbQIxMABicmlkETFzaDc3NWRaYzlJOFJ4R0Fic3J0YwZhcHBfaWQQMjIyMDM5MTc4ODIwMDg5MgABHrwuSsw8Be7VNGOrKKWFVbrjmf59SGht05nIALwnjQ0DoGkDDK1doRBDzeeX_aem_GZcRcbhisMTyFUp3YMUU9Q
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      Hi @Atl222 As @trents points out, there could be many reasons for this biopsy result.  I am interested to know, is your gastroenterologist concerned?  Also, are your blood tests showing steady improvement over the years? I remember when I had my last biopsy, several years after diagnosis, mine came back with with raised lymphocytes but no villous damage, too! In my own case, my consultant wasn't remotely concerned - in fact, he said I might still get this result even if all I ever did was eat nothing but rice and water.   My coeliac blood tests were still steadily improving, albeit slowly, which was reassuring.
    • trents
      Welcome to the celiac.com community, @Atl222! Yes, your increased lymphocytes could be in response to oats or it could possibly be cross contamination from gluten that is getting into your diet from some unexpected source but not enough to damage the villi. And I'm certain that increased lymphocytes can be caused by other things besides celiac disease or gluten/oats exposure. See attachment. But you might try eliminating oats to start with and possibly dairy for a few months and then seek another endoscopy/biopsy to see if there was a reduction in lymphocyte counts. 
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