Please Help With Endoscopy Biopsy Results

[wannaBAmama]

Hi there-

First off, thanks to all of you posting to this forum. The forum has been a lifesaver for me as I sort out what is going on with me. I just got my endoscopy biopsy results today and want to confer with you to see if what my GI doc is telling me makes sense, and whether any of you have had similar results.

My history (sorry this is so long!)

39 y/o, 5 miscarriages in 2 years

Through some genetic testing determined I have gene mutations related to B/K vitamin malabsorbtion and HLA-DQ alpha is 0505. Did not do full genetic test for celiac gene

Did gluten-free trial for 2 weeks before reading here - should have waited as I had to go back on gluten to get tested (1 week back on gluten before blood tests, 3 weeks back on gluten before endoscopy)

Responded amazingly well going gluten-free first time- after 3 days no more regular tummy aches, soft stools and D. After going back on gluten for tests- all symptoms and pain returned. Can't believe I suffered for so long thinking constant tummy aches and all that goes with it was normal.

blood test results negative for celiac (done through biohealth labs) taken 1 week after going back on gluten.

Anti-Gliadin IgA: 16.59 (0.01-20)

Anti-Gliadin IgG 17.21 (0.01-20)

Anti-transglutaminase IgA: 9.64 (0-20)

Immunoglobulin IgA: 283 (70-300)

Saliva tests:

Secretory IgA: 10.08 (7.25-21.5)

Gliadin IgA 8.6 (.1-10.0)

went on modified elimination diet 12/22 which eliminates gluten, dairy, egg, vinegar, citrus, strawberries, beef, pork, corn, quinoa, shellfish, peanuts, soy. Noticed 2nd time around going gluten-free stopped stomach aches but stools remained irregular - but was also taking antibiotics for possible parasite and now probiotics so that could be the reason. Tummy aches and D gone now that I am gluten-free other than one episode when I accidentally glutenated myself.

Results from endoscopy:

duodenum: normal villous architecture but found presence of moderately increased intraepithelial t-lymphocytes (white blood cells) confirmed by immunostatins for CD3.

terminal ileum: numerous reactive lymphoid modules. granulomatous inflammation is not identified

So the takeaway I got from my doctor is that she cannot confirm a diagnosis of celiac since I do not have villi degenerated but the increased white blood cells suggest inflammation and could be a number of conditions, once which could be early celiac. She said it could also be IBS or a bacterial overgrowth- both which could reduce symptoms by going gluten-free. She said there was no straightforward way to confirm whether it is indeed a bacterial ovegrowth but said I could go on a powerful antibiotic course for 10 days to be safe. At this point I've spent to much time and money on trying to get to the root of my infertility I'm willing to go for the antibiotic course (which will also be expensive - apparently insurance does not cover this particular drug). But I wanted to check wtih you to see if you have had similar diagnosis. I know gluten makes me sick and has for a long time so clearly going gluten-free now is what I need to do. But is the bacterial overgrowth a viable explanation?

thanks in advance for any of your learnings!

Gina

[Guest j_mommy]

So you were on gluten for only a week before testing??? How long were you gluten-free for before that???

[CarlaB]

Bacterial overgrowth can cause similar symptoms. Google SIBO to learn more.

Cipro is an abx that I used for it and it worked great. The thing was, as soon as I got off it, it came back! So, then I too oregano oil, plant tannins, and uva ursi, along with massive probiotics (Theralac and Ultra Flora), this brought it back into balance and my symptoms diminished.

It takes a long time to get a bacterial imbalance, and it will take time to normalize it if that's what you have.

I don't think that two weeks off gluten would have made a huge difference in your testing, though you can start to heal in that time. It's not like you had borderline test results. I'd keep looking for what else could be wrong.

How did you do on the gluten-free diet?

[wannaBAmama]

I was gluten-free for 2 weeks then went on gluten for 1 week and did the blood test. I will look at SIBO and see if it rings any bells. My doctor is recommending a different antibiotic that it a lot more expensive than Cipro but much more likely to really rid me of the infection -she had said Cipro was her 2nd choice but taht it's up to me since the cost is so much higher for the other one. I don't remember the name but I'm heading out to the pharmacy soon to pick it up. I've spent so much on my journey already I'm willing to splurge for this if it gets me closer to having a child.

I did amazingly well going gluten-free for that 2 week trial. Now that I am gluten-free again since 12/22 my tummy aches and D have gone away but I'm still not "regular" stool-wise like I was during the 2 week trial. I think this could be due to the probiotics.

thanks again,

Gina

Bacterial overgrowth can cause similar symptoms. Google SIBO to learn more.

Cipro is an abx that I used for it and it worked great. The thing was, as soon as I got off it, it came back! So, then I too oregano oil, plant tannins, and uva ursi, along with massive probiotics (Theralac and Ultra Flora), this brought it back into balance and my symptoms diminished.

It takes a long time to get a bacterial imbalance, and it will take time to normalize it if that's what you have.

I don't think that two weeks off gluten would have made a huge difference in your testing, though you can start to heal in that time. It's not like you had borderline test results. I'd keep looking for what else could be wrong.

How did you do on the gluten-free diet?

[ravenwoodglass]

Personally I would give the diet a couple of months before going with the antibiotic. That is my personal opinion, others may feel differently.

One word of caution is about the drug she may be thinking of giving you. A newer, more powerful drug called Levaquin is on the market. It is considered an upgrade to cipro. If this is the drug that she is planning on using on you make sure she has done bacterial cultures to be positive that this drug is being used on a bacteria it is recommended for. The maker is very specific about that in the drug leaflet but not all doctors pay attention to those, unfortunately mine didn't. Levaquin can have some serious side effects that some might put off as being a normal D reaction for antibiotics. But the drug in some people can shut down their pancreas. This happened to me with one dose. If you should decide to take it and you see totally undigested food in your D make sure you contact the doctor immediately, before you take another dose. It can also cause hallucinations in some people, that also is rare but is startling when it happens.

[wannaBAmama]

Wow - that is so scary about your reaction. I hope you are doing better now. The antibiotic is not Levaquin - it is called Xifaxan and the ingredient name is Rifaximin. What is interesting about this drug is that it will not be absorbed into my bloodstream - it is supposed to stay in my intestines. I've decided to start taking it today (and I guess I have good insurance - it only cost me $20) as I am running out of time on trying to get pregnant and every month counts. I will be on the lookout for any strange symptoms though and stop taking it if I do. thanks so much for the warning!

Gina