diagnosis finally

[hillview]

you may remember I've had issues with diarrhea and had some testing done. the colonoscopy came back with a dx of
lymphocytic colitis

I don't know a lot about it but it looks pretty not super horrible :). I am so happy to have a dx that isn't awful.

[MSWR0319]

So happy it's something that isn't too bad!! I hope they can get you symptom free!

[Kindra178]

That's great news.

[gatorsmom]

You must be so relieved!

[elektra]

Thanks for the update!

[Indianamom2]

Isn't it amazing how our minds can imagine things so much worse than what the reality turns out to be? Congratulations?? :wink2: and get well soon! Glad you got some answers.

[Melaine]

Don't know much about it, but glad you found some answers! HOpe you get relief soon!

[elektra]

What a relief. Hope you can get the proper treatment now and start feeling better!

[mommy111]

Yayyy!! Be well!

[FTMLuc]

So nice to have an answer! Get well soon!

[wendibird22]

Glad to hear you finally have an answer. The "known" is so much better than the unknown for sure and now you can devise a plan to feel better.

You may want to talk to your GI about whether you should try GF as there appears to be a correlation between lymphocytic colitis and celiac and/or gluten intolerance for some people.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2661290/
http://thefooddoc.com/lymphocytic_colitis__collagenous_colitis
http://www.perskyfarms.com/phpBB2/viewtopic.php?p=63136
http://www.cblpath.com/uploads/Lymphocytic_Colitis.pdf

[lcarlson90]

I am glad you found some answers...the not knowing is the hardest part. Hopefully it's something that is easily treatable.

[crl]

So happy it's something that isn't too bad!! I hope they can get you symptom free!

:yeahthat:

Catherine

[MamaMolly]

Finally! I know it is a relief. I hope the road to wellness is smooth and fast!

[wendmatt]

Glad they found something and it's not life threatening. HOpe it can be treated and you are well soon

[lovin2shop]

Sounds like good news, I hope you are feeling better soon.

[hillview]

WOW thanks all for your well wishes!


Glad to hear you finally have an answer. The "known" is so much better than the unknown for sure and now you can devise a plan to feel better.

You may want to talk to your GI about whether you should try GF as there appears to be a correlation between lymphocytic colitis and celiac and/or gluten intolerance for some people.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2661290/
http://thefooddoc.com/lymphocytic_colitis__collagenous_colitis
http://www.perskyfarms.com/phpBB2/viewtopic.php?p=63136
http://www.cblpath.com/uploads/Lymphocytic_Colitis.pdf

Wendi wondering if you think it is possible to have a negative celiac panel and be gluten sensitive?

[Momit]

Great you have an answer and it's a better one than you expected!

[hellokitty]

I'm glad that you have a diagnosis! That is sometimes the hardest part! Hoping that you will be on the right path toward helping this condition soon.

[Melbel]

I am glad to hear you have a diagnosis and potential pathway to feeling better. I encourage you to dig deeper, however, to the route cause of the condition (viral, bacterial, autoimmune) to prevent additional damage and/or treat your condition.

[mytwosons]

WOW thanks all for your well wishes!



Wendi wondering if you think it is possible to have a negative celiac panel and be gluten sensitive?

Not Wendi, but....gluten sensitivity does not appear on a celiac test. There is a school of thought that there is a gluten sensitivity that very closely mimics Celiac (destroys the lining, etc), and while severe, will never show up in Celiac tests.

ETA: Just to be clear...typically a sensitivity causes discomfort, but no damage. Some people now think there is a form of gluten sensitivity that actually damages the intestines.

[Melbel]

WOW thanks all for your well wishes!



Wendi wondering if you think it is possible to have a negative celiac panel and be gluten sensitive?


Not Wendi, but....gluten sensitivity does not appear on a celiac test. There is a school of thought that there is a gluten sensitivity that very closely mimics Celiac (destroys the lining, etc), and while severe, will never show up in Celiac tests.

Our kids are all gluten and casein sensitive, but not celiac or allergic (this happens to be common with Lyme; part of the inflammatory cascade).

[hillview]

Not Wendi, but....gluten sensitivity does not appear on a celiac test. There is a school of thought that there is a gluten sensitivity that very closely mimics Celiac (destroys the lining, etc), and while severe, will never show up in Celiac tests.

ETA: Just to be clear...typically a sensitivity causes discomfort, but no damage. Some people now think there is a form of gluten sensitivity that actually damages the intestines.


Our kids are all gluten and casein sensitive, but not celiac or allergic (this happens to be common with Lyme; part of the inflammatory cascade).

How do you test for celiac?

[Melbel]

Blood testing for sensitivity; biopsy for celiac. There are different tests for celiac vs. gluten sensitivity. You could also try an elimination diet. I have not tested myself, but adhere to the same diet as the kids (other than a pizza binge in my car one day, lol).

[goldenpig]

Glad you got some answers and hope you feel better soon! There are medications that can treat lymphocytic colitis, if you're still having symptoms, but sometimes it just goes away on its own.


How do you test for celiac?

The gold standard is a biopsy of the duodenum to check for intestinal damage (during an upper endoscopy--I think you just had a colonoscopy, right?). There is also blood testing for antibodies (usually tissue transglutaminase antibody +/- endomysial antibody is checked along with IgA control). You can get false negatives on both if you are on a gluten-free diet, so it is best to consume gluten for at least a couple of weeks before testing. There is also a blood gene test that does not depend on your diet, that tests for genetic predisposition to celiac. If you are negative for both haplotypes DQ2 and DQ8, it is extremely unlikely that you have celiac (98% of all celiac patients have at least one of the two haplotypes). Some people are sensitive to gluten with symptom improvement on gluten-free diet, but test negative and do not have celiac disease. If you do have celiac, it's more critical to be strictly on a gluten-free diet because there can be long-term damage even with small amounts of gluten. If you are only gluten-sensitive, you can minimize gluten but don't necessarily need to avoid all traces of gluten. Elimination diet can help test for sensitivity if the other tests come back negative for celiac (ie avoid all gluten for at least 2 weeks, if symptoms disappear and then come back as soon as you start eating gluten, then you may be gluten sensitive).

[wendibird22]

WOW thanks all for your well wishes!



Wendi wondering if you think it is possible to have a negative celiac panel and be gluten sensitive?

Yup, that's me! NCGS...non-celiac gluten sensitive. I tested negative on every celiac blood test they offer (and yes, I requested them all after my doc only ran one). I did not have an endoscopy done (doc wouldn't refer me since I had neg blood tests). However, I've spent lots of time over at celiac.com and well, there's a gazillion people over there who tested neg and either had a positive endoscopy (meaning celiac) OR had total elimination of symptoms on a GF diet. My doc (despite my initial complaints above) was more than happy to officially diagnose me as NCGS and not just IBS (total junk label IMHO) after my positive response to GF diet. Lots of current research going on about NCGS and celiac and the spectrum of sensitivity and the limitations of current testing methods. Right now they test for antibodies to gluten but my understanding is there are different subtypes of antibodies that can be created in reaction to gluten and the current blood tests only test against the most common type.

I will totally admit that while I was pushing for thorough testing I was also convinced gluten wasn't my issue as the first few weeks of elimination diet wasn't really yielding results. My doc convinced me to stick with it and lots of reading on celiac.com boards made me realize that it can take 3-6mo of being 100% GF (including sources of cross contamination) for a person to start feeling better. For me it took 3-4mo before I noticed consistent, day in and day out reduction of my symptoms. IMHO it doesn't cost a person anything to eliminate a potential food sensitivity and carries no side effects unlike the meds my doc was more than happy to put me on indefinitely (heartburn med and IBS med). I need neither now. I'm 1.5yr GF and happy and healthy.

[wendibird22]

Glad you got some answers and hope you feel better soon! There are medications that can treat lymphocytic colitis, if you're still having symptoms, but sometimes it just goes away on its own.



The gold standard is a biopsy of the duodenum to check for intestinal damage (during an upper endoscopy--I think you just had a colonoscopy, right?). There is also blood testing for antibodies (usually tissue transglutaminase antibody +/- endomysial antibody is checked along with IgA control). You can get false negatives on both if you are on a gluten-free diet, so it is best to consume gluten for at least a couple of weeks before testing. There is also a blood gene test that does not depend on your diet, that tests for genetic predisposition to celiac. If you are negative for both haplotypes DQ2 and DQ8, it is extremely unlikely that you have celiac (98% of all celiac patients have at least one of the two haplotypes). Some people are sensitive to gluten with symptom improvement on gluten-free diet, but test negative and do not have celiac disease. If you do have celiac, it's more critical to be strictly on a gluten-free diet because there can be long-term damage even with small amounts of gluten. If you are only gluten-sensitive, you can minimize gluten but don't necessarily need to avoid all traces of gluten. Elimination diet can help test for sensitivity if the other tests come back negative for celiac (ie avoid all gluten for at least 2 weeks, if symptoms disappear and then come back as soon as you start eating gluten, then you may be gluten sensitive).

Great response from Goldenpig!!!

In addition to tTg and EMA you can also ask for a newer test call dgp (deamidated gliadin peptide).

[lmh2402]

glad you got some answers and that they aren't too worrisome!

[hillview]

can I be stupid -- we just spent the last week in Paris (rough life I know) and I ate french bread and croissants every day -- a lot WAY more bread products than I have at home. I had NO diareah at all on the entire trip. One night of gas pain (our first night there). Can I have a gluten problem and eat this much bread/pastry with no issues?

[Katigre]

can I be stupid -- we just spent the last week in Paris (rough life I know) and I ate french bread and croissants every day -- a lot WAY more bread products than I have at home. I had NO diareah at all on the entire trip. One night of gas pain (our first night there). Can I have a gluten problem and eat this much bread/pastry with no issues?

Yes you can.

Sent from my Android phone using Swype

[wendibird22]

Yes it is possible. Here's how it was explained to me. Your immune system is an army. If that army is getting fired on rapidly the army's response is going to be lessened. It can't fight back day in day out against that onslaught so it gets tired and weak in response. Take the gluten away for a few weeks and the army has time to recover, build strength and ammunition. Hit the army with gluten again and it'll fight like heck initially.