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Positive Biopsy Negative Blood Work

mammaof5

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mammaof5 Newbie
mammaof5
Posted

Hello everyone this is my first post and I have done a ton of research I. The last month or so ... To make a long story short I had a endoscopy which they found my stomach to be red and inflamed and the pathologist found lymphocytosis in small intestine so the doctor sent me for a full celiac blood panel ( which all came back negative) yes I was eating gluten at the time ... Just some history I have been in so much pain and feeling sick since I had my 3rd baby 19 months ago symptoms are burning and craning in lower abdomen stomach cramping after eating I also am VERY fatigued and get swelling in my hands and feet ... I have seen a urologist who did and bunch of test and told me I have IC ( intersticail cystitis ) non curable bladder pain always have white blood cells in urin with no infection .... So anyways they call with my blood work and say well celiac was negative and that was it .. It was not until I asked a bunch of questions that my doctors MA said well maybe you should come in and talk to the doctor ... At the end of the apt he says you need to go gluten free for 3 weeks and I'll see you back ( he was not even going to see me in the first place but I asked to many questions ) anyways I have read that lymphocytes are usually early signs of celiac ... What are your thoughts

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Mel75 Newbie
Mel75
Posted

I'm in the same situation. My biopsy also was suspicious for celiac but negative blood work. So I'm left with the confusion on what's causing the inflammation. I don't feel awful though. Just fatigue and some minor stomach issues. I was started on an acid reducer twice a day and it has helped a lot. But my colon and small intestine shows inflammation. The report from my procedures calls it erosive but my GI doctor called them ulcers?

What exactly does your pathology report say?

cyclinglady Grand Master
cyclinglady
Posted

Are you sure you received the full celiac disease panel? I know that my provider only offers the screening (TTG IGA and IGA deficency tests). They will only order the full screening if you insist or you have a celiac disease savvy GI doctor. Did they rule outs IBD, Crohn's, SIBO or H Pylori?

I would recommend getting copies of all your lab results.

I am not sure that three weeks on a gluten-free diet will resolve your symptoms. Took me six weeks to see any improvement, a few months for my anemia to resolve and two years before I really felt great. But if all your tests were negative for celiac disease, the diet might be worth trying.

I hope you figure it out!

mammaof5 Newbie
mammaof5
Posted
  • Author

That is kind of what they told me right after my biopsy the doctor prescribed an anti acid pill and told me to do anti acid diet once they results from pathology came in they told me well you have lymphocytosis and we are sending you for blood work ( funny part is I asked ok does that mean celiac and the lady put me on hold ... At least she thought she did but I could hear her .. And she asked someone sitting next to her she is asking about celiac should I tell her she has it and the other lady said no tell her we are doing further testing) anyway pathology repost says .... Duodenal intraepithelial lymphocytosis with preservation of villous architecture also states mild reactive gastropathy and no helicobacter pylori

mammaof5 Newbie
mammaof5
Posted
  • Author

I have copies of everything yes they did a full panel

Immunoglobulin A , QN serum 129 range 91-414

iGA 3 Range 0-19

Igg 3 Range 0-19

(Ttg) iga < 2. Range 0-3

(Ttg) igg 2. Range 0-5

mammaof5 Newbie
mammaof5
Posted
  • Author

Oh yes I forgot it was very late when I wrote my post but I also suffer from sever bloating I am a small girl and I look like I'm 7 months pregnant by the end of the day I have a rash that comes and goes on my hands they are little tiny bumps filled with clear liquid and itch like crazy!!!!! I also have brain fog that seems to be getting worse I'm a stay at home mom and now all the sudden I forget apt and even dropped my kindergarten off at school to early one day I feel like I'm losing it and I'm only 28 my 5 yr old was hospitalized back in May for sever diarrhea like over 20 times in a day they though he had appendicitis but his ilium was infected after 3 days in the hospital they sent us home they kept asking about chrons ( which does not run in the family) since then he has had 3 separate time of bouts of diarrhea his doc is now sending him to a GI ... Ahh so frustrating ... I have been on and off pain pills for a year now and I don't want to take them I just want to feel better I have started gluten free I'm on day 6!!! I also just want answers!!

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    • deanna1ynne
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      By deanna1ynne · Posted

      And thank you for your encouragement. I am glad that her body is doing a good job fighting it. I also just want clarity for her moving forwards. She was only 6 for the last round of testing and she's 10 now, so I'm also hoping that makes a difference. It was weird during her last round of testing though, because right before her biopsy, we'd upped her gluten intake by giving her biscuits made from straight up vital wheat gluten, and her labs actually normalized slightly (lower ttg and her ema went negative). Bodies just do weird things sometimes! lol
    • deanna1ynne
      Inconclusive results

      By deanna1ynne · Posted

      The first negative biopsy in 2021 just said "no pathological change" for all the samples, and the second one in 2022 said "Duodenal mucosa with mild reactive change (focal foveolar metaplasia) and preserved villous architecture." So I think Marsh score 0 in both cases, though it's not actually written in the pathology reports. I'm really hoping to get a clear positive result this time, just for her sake.  
    • Wends
      Blood results

      By Wends · Posted

      Hopefully the biopsy gives a conclusive and correct diagnosis for your daughter. Im in the UK and have been in the situation a few years ago of trying to rule celiac in or out after inconclusive results. Many symptoms pointing to it including the classic symptoms and weight loss and folate and iron deficiency. You have to play a waiting game. I also had the label of IBS and likely food allergy. Genetic test showed low risk for celiac but not no risk. It sounds like the Gastroenterologist is on it and hopefully will diagnose what it is correctly. Food hypersensitivity (allergy) can also cause similar symptoms and inflammation as well as mimicking IBS. Milk / dairy and wheat (cereal grains) being the biggest culprits. The “oesophagitis” and “gastritis” you mentioned can be caused by another gastrointestinal disorder called “eosinophilic gastrointestinal disorders”. These are named depending on which part of the gastrointestinal tract is affected. For example eosinophilic oesophagitis, eosinophilic gastritis, eosinophilic gastroenteritis, and more rare eosinophilic colitis. They are antigen (allergen) driven. When the blood test measuring anti-ttg antibodies is positive in absence of a positive ema test - which is more specific to celiac, this can also suggest food hypersensitivity (allergy). Usually delayed type allergy similar to celiac but not autoimmune if that makes sense. In this case the ttg antibodies are transient. Which happens. I’ve first hand experience. For info, evidence of villous atrophy too can be caused by food hypersensitivity. Not just by celiac disease. In Egid disorders the six food elimination diet, under a dietitian and gastroenterologist care, is the dietary protocol to figure out the culprit or culprits. Sometimes only two food elimination diet is used at first. The number one culprit is milk protein / dairy. Followed by wheat, eggs, soy, fish and seafood, and nuts. Most are only reactive to one food group or two. Most are only reactive to milk. Hope this is a helpful reply.
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