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Need Help Please!

heather van

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heather van Newbie
heather van
Posted

I have been seeing many docs for the past two years for symptoms that completely fit celiacs. but they are just giving diagnosis of ibs or issues from having my gallbladder out after histroectomy.(even though had inflamation in small intestine since after histo.) But it is not just fatty foods that bother me, really its any food it seems. I have had D for two years now and have lost 60 lbs this year without trying(heavy carb lover and coke drinker?) many other symptoms include

iga deficient

weight loss

fibro

neuropathy

joint pain

bloatting

extreem stomach pain

inflamation(4 ct scans) in small intestine

very low vitamin d levels

trouble with absorbing nutrients(can't keep it in

nasua

fatigue

low grade temp frequently???

And even being diagnosed falure to thrive as an infant(saw this listed on another site)

They ran blood work and did biopsy a year ago said test were negative but there was inflamation in small intestine.(it's been there for two years. since then symptoms have gotten worse, now vitamin d is low, and they actually relooked at iga levels(iga deficient like I told them) and yet they wont redue the biopsy? can the results change in a year? what do you do, it's not like I want this diagnosis(love my carbs) but I am tired of feeling so sick all the time, I can't even enjoy eating or have the energy to be with my kids. the only thing that stops D is to actually stop eating? have been looking at just going Gluten-Free to see if it helps but everything says not to untill you get diagnosis.

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adab8ca Enthusiast
adab8ca
Posted

oh my. First, I am SO sorry that you are suffering so much. Many, many times the biopsies can be falsely negative. If they don't look in the right place or take enough samples, damage can be missed. Depending on the blood work they did, it may be also falsely negative if you are IgA deficient. There are tests that can be run for IgA deficient people (one of them is the TTG-IgG) and you should ask your doctor about those.

If they do the test and it comes back negative or won't do the test, I would give gluten free a good try. Many, many of your symptoms are CLASSIC of gluten intolerance. Many people have gotten relief from the gluten-free diet without a "firm" diagnosis.

Good luck!!!

heather van Newbie
heather van
Posted
  • Author

oh my. First, I am SO sorry that you are suffering so much. Many, many times the biopsies can be falsely negative. If they don't look in the right place or take enough samples, damage can be missed. Depending on the blood work they did, it may be also falsely negative if you are IgA deficient. There are tests that can be run for IgA deficient people (one of them is the TTG-IgG) and you should ask your doctor about those.

If they do the test and it comes back negative or won't do the test, I would give gluten free a good try. Many, many of your symptoms are CLASSIC of gluten intolerance. Many people have gotten relief from the gluten-free diet without a "firm" diagnosis.

Good luck!!!

Thank you so much for the help and information. I will be talking to my doctor again!

heidi g. Contributor
heidi g.
Posted

My dad had his gall bladder removed and he says it made his symptoms worse. Definitely check into celiac testing. My blood test was false but biopsy and genetic testing (testing for the hereditary gene for celiacs) came back positive.

kingle Newbie
kingle
Posted

I do wonder if there is a link between gall-bladder and gluten. My "symptoms" really started after I'd had my gall bladder taken out in 2000. Over the years they've gotten steadily worse. I'd be curious to know if anyone else sees a link?

mushroom Proficient
mushroom
Posted

I'm afraid gallbladder and celiac are a common story on these boards. Often the poster will have had the gallbladder removed hoping for relief from symptoms, and they just continue to get worse. Not to say that some of these gallbladders did not need removing, but others have had relief of gallbladder-type symptoms on a gluten free diet (even symptoms which have been confirmed as coming from the gallbladder) so there does seem to be a definite correlation.

heidi g. Contributor
heidi g.
Posted

Yea also my aunt had her gall bladder removed and she feels nauseous and sick all the time. She had a alot of tests done and they couldn't find anything so they ruled it as severe ibs. I called her and my dad for you and they said they find relief from avoiding dairy and pastas and breads. My dad drinks something called aloe Vera juice (you can get it at Walgreens) and he said it provides him relief. I now drink it to and it helps with bloating and D.

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    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
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      High DGP-A with normal IGA

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      Food and environmental allergies involve IgE antibodies.  IgE antibodies provoke histamine release from mast cells.   Celiac disease is not always visible to the naked eye during endoscopy.  Much of the damage is microscopic and patchy or out of reach of the scope.  Did they take any biopsies of your small intestine for a pathologist to examine?  Were you given a Marsh score? Why do you say you "don't have intestinal damage to correlate with lifelong undiagnosed celiac disease"?   Just curious.  
    • rei.b
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      By rei.b · Posted

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      Welcome to the forum, @Kara S! Warrior bread is a grain free bread product. Google it. There are commercial mixes available, I believe, Youtube videos and many recipes. 
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