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theresa70

Is Endoscopy Needed For My 5 Year Old Daughter?

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My daughter complains of stomach pains, mostly at night. Sometimes she throws up and sometimes she doesn't. Celiac does not run in our family.  My ped doctor ran blood work on ther for every food allergy and celiac comprehensive.  Here are her numbers, Deamidated Gliadin Abs IgG= 69, tTF IGA= 26, Endomysial Antiboday IgA says Positive Abnormal.  Does this mean celiac? She was negative for every ohter food allergy including wheat.  My Ped GI is suggesting the endoscopy but he is 90% sure she has celiac.  I am not sure I want to do the endoscopy.  She has no oher symptoms other than the stomach ache which keeps us up for hours at night and sometimes she throws up. I am happy to just go straight to the gluten free diet. Any information woudl be great.

Thanks

Theresa

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One positive test is caused by celiac disease about 95% of the time. Three positive tests is a sure thing - she has celiac disease.  :(  This report has more info on the blood tests on pages 10-12, and info on the endoscopy from pages 7-10:

http://www.worldgastroenterology.org/assets/export/userfiles/2012_Celiac%20Disease_long_FINAL.pdf

 

The endoscopy is helpful for a few reasons: 1. It gives the doctors a chance to look for other problems.  2. it provides a baseline to know where you are starting from in the rare case that her healing is slow or non-existent.   3. It makes it easier (for some) to follow a strict gluten-free diet.  4.  Some doctors won't give a diagnosis without one, and it may be needed for future (school) accommodations.

 

That all being said, I skipped the endoscopy when I had two positive tests. I knew that damaged parts can be missed in biopsies which can make some people doubt the diagnosis and make it harder to stay gluten-free. My symptoms did improve on the gluten-free diet so I'm confident I did the right thing.

 

It is a personal choice. Do what works best for your family.

 

Welcome to the board.  :)

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We skipped the endoscopy because my daughter was too sick to have it done at 15 months old.  Positive blood panel and 2 Celiac genes.

 

Then when she was 6, the endoscopy was done to diagnose Eosinophilic Esophagitis.  Unfortunately Celiac and EE are related and you have just stated 2 symptoms of EE along with Celiac.  Trouble sleeping and vomiting (this is more common for young Celiac patients and you didn't say the age of your child.)

 

I would schedule the endoscopy.  Better to find out exactly what you are dealing with.

 

There was also a poster that had major surgery done from findings during his Celiac diagnoses.

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My daughter complains of stomach pains, mostly at night. Sometimes she throws up and sometimes she doesn't. Celiac does not run in our family.  My ped doctor ran blood work on ther for every food allergy and celiac comprehensive.  Here are her numbers, Deamidated Gliadin Abs IgG= 69, tTF IGA= 26, Endomysial Antiboday IgA says Positive Abnormal.  Does this mean celiac? She was negative for every ohter food allergy including wheat.  My Ped GI is suggesting the endoscopy but he is 90% sure she has celiac.  I am not sure I want to do the endoscopy.  She has no oher symptoms other than the stomach ache which keeps us up for hours at night and sometimes she throws up. I am happy to just go straight to the gluten free diet. Any information woudl be great.

Thanks

Theresa

 Do the endoscopy now, before she goes gluten-free.  She will need this for a "gold standard" diagnosis.  This is very important for her long term adherence to the diet and so other people believe you and take you seriously.  It may not be a big deal today if you have total control over what she is exposed to, but she will be out in the world.  Other people will treat it as a diet fad, instead of a serious disease.  This will cause her damage.  You will need the diagnosis for a 504 plan at school, so they can buy gluten-free art supplies and make other accommodations.  You will need the diagnosis, 90% sure leaves room for questions down the road and makes it super hard to be 100% vigilant about cross contamination FOR LIFE.  I can't express enough how how easy it is to cut corners when you are only 90% sure. Something in the head says, well, i don't know for sure, so i guess i can let it slide.  You will need the diagnosis so you have the confidence to always advocate on her behalf and so that she will for herself.  You don't want her to become an adolescent and think mom was just being overprotective, paranoid, brush off what YOU say (rebel).  Its easier to follow doctors orders.    You will face family and friends who will brush your requests off without an official medical diagnosis by a doctor.  This is a difficult path.  The endo is not a big deal.  You LO will go to sleep and it will be done in a few minutes.

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Thanks so much for the replies.

I see what  you are saying about needing it for school and making it easier to understand that we hve to go 100% gluten-free.  I am even questioning it in my mind if it isn’t Celiac then what is it? So I know I should just go for the endo so we know exactly what we are dealing with.   I just worry about the whole procedure itself.   We are meeting with her GI tomorrow morning, he will go over her labs with us and go over the procedure.

 

I was told to not go gluten-free just yet until we have the test done but we are exhausted and have to get some sleep so I have been trying to make steak or chicken for dinner with broc, cucumber and either potato or rice.  Last night she wanted meatballs and pasta so I did make the gluten-free rice pasta which was delicious by the way. The whole family had it and loved it.  Not that it helped. My daughter and I were still up for hours because her tummy hurt. The strange thing is that the majority of her symptoms, is that her tummy hurts but no diarrhea and she only throws up if she had regular pasta.  I do notice she is a little itchy too, some dry skin.

 

She will be in full day Kindergarten in September. Right now she is in pre school half day.  So I know the right thing to do is to get the 100% diagnosis so that we can move on and do what we need to do.  I am just having a hard time agreeing to the endo.  How do the kids feel after that get this? I know it is a day procedure but not sure what to expect after.

 

When you mention the school may need to order gluten-free art supplies, what do you mean by that?  It is because it can also cause skin irritation?

 

The other thing is this does not run in our families. I am Greek and my husband is Italian. I know my husband’s side has lactose intolerance or allergy not sure if that could be how my daughter may have celiac.

 

Thanks again.

Theresa

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Gluten free art supplies would be for stuff like playdough. As far as science knows, gluten can not pass through the skin, nor does it cause skin irritation. The gluten-free supplies would be in case she licks her fingers after using  playdough. Stuff like that.

 

Celiac doesn't need to run in the family but I would be willing to bet money that there is a history of autoimmune diseases somewhere, which is all you need. Any hypothyroidism, rheumatoid arthritis, type 1 diabetes, raynauds, lupus? If so, that's probably where it's coming from.  Your heritage doesn't have much to do with the likelihood of getting celiac disease, although it's not uncommon in Italy; I don't know of the prevalence in Greece.... And lactose intolerance can be a sign of celiac disease as the villi are what make lactase to digest lactose, and the intestinal villi is usually damaged in celiacs.

 

As for how she is after the endoscopy, I have heard that it's a pretty simple and painless procedure but that a popsicle would be welcomed afterwards to sooth an irritated throat. Good luck!

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Well we scheduled the endoscopy for next week. I am nervouse about it but I do think it woudl be best to have 100% diagnosis.  The GI doctor is 95% sure based on her blood work that she does have celiac.  He will also give me name of a nutritionist as well.  Hopefully this is the right move.

 

Thanks for the replies.  Appreciate it.

Theresa

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My 5yr old daughter had the endoscopy (along w/some other GI procedures) and did great! The hardest part was watching her be put under anesthesia & then having to wait for it to be done. She woke up ok and had some raspiness for an hour or so.

Sorry I don't have any feedback on your other questions, but just thought I'd ease your mind about the endoscopy.

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My 5yr old daughter had the endoscopy (along w/some other GI procedures) and did great! The hardest part was watching her be put under anesthesia & then having to wait for it to be done. She woke up ok and had some raspiness for an hour or so.

Sorry I don't have any feedback on your other questions, but just thought I'd ease your mind about the endoscopy.

Thank you so much for reaching out.  I do appreciate hearing fromt those that had a good endoscopy experience. I just wish the test was over and we were moving along with the gluten-free diet.  But a few more days to go.  Ugh.  My daughter is having the biospy done as well did yours? I asked if itsn't celiac will he be able to see what else it is? The nurse said he can check for reflux disease as well and lactose also.  Meahwhile I have been giving her more gluten-free food just so we can get some rest at night, she is doing much better and we've had no trouble sleeping the last 3 or 4 nights.  I made Betty Crocker gluten-free brownies for her Valentine party at pre school,, they were actually very good.  Not sure we've found a good gluten-free roll for burgers.  I found the Udi's bread to be good and she likes it but the rolls I got one night were too rice gooey.  Something strange about them. I forget the brand I tried. Anyhow thanks for the response.

Theresa

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We went ahead and scoped the two oldest kids.  I wanted to know what we were starting with - in case there was serious damage.  Both came back negative from the biopsy, but the oldest was still DX.

 

Here's what I wrote on another board about our experiences:

 

Two of my kids had an endoscopy with biopsy last month and they had completely different experiences. Both took place on the same day - back-to-back appointments.

7 y/o girl - She took the IV while fully awake so she had a lot less anesthesia and came out great. Woke within ten minutes of being wheeled back in the room. Groggy for a handful of minutes until she ate a snack and had a little drink. She was fine after. They told me to keep her out of school for the rest of the day since you're not supposed to run or balance during the remainder of the day. She totally could have gone to school!

3 y/o boy - He wasn't nervous, but they gave him a kid valium (not sure what was the RX) about 30 minutes before going back. Then they had to gas him to get the IV. He slept for 45 minutes (would have slept more, but they helped wake him) and was just cuddly. I was promised a 4-6 hour nap (he normally naps 2-3 hours) - he didn't nap!! He was WOUND up for the rest of the day, but super cranky since he was tired.

If I had to do it again I would have gone against the rules and given both kids clear liquids that morning. Their last drop of food or drink was dinner the night before - 6p...and then they couldn't eat a snack until they woke up - 10-11a. They were starving! The prep call person told me NPO, but the surgery person told me that is simply NOT true for little kids and they can have clears.

eta: The GI told me that it can be VERY difficult to get the endoscope very far down. In 99.5% of her patients (she only does pediatrics) she can only get less than 6" down. For my older kid she got down *really* far and took a bunch of biopsies. Her only reasoning is that this particular child is very tall and thin so the endoscope just slid on down.

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Hi Theresa,

My DS had his endoscopy last month and got a confirmed diagnostic almost 2 weeks ago now. It went very quickly. The procedure itself( not counting, anesthesia, waking up period) lasted 20 min and he was not in pain at all afterwards. To us it was worth it because now everyone is enforcing it at school in particular.

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For the school to comply with 504 accommodations you don't need proof via biopsy.  The only requirement is DX by physician.  My kids' GI doesn't require a positive biopsy to DX.

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Hi all,

 

So my daugher had the endoscopy yesterday.  I have to say she was so brave and did so much better than me. I felt like I was a wreck!  Anyhow, she did very well with letting them put the IV in with no drink before.  I think that was much better bc she had less medicine and woke up pretty good. 

The doctor came out and told us everything looked normal. He did not see any scaling so now we have to wait for biopsy results. He should have them tomorrow.  Her blood test look like this: tTG IgA= 26 and the Endomysial Antibody IgA said Positive Abnormal.  The Deamidated Gliadin Abs IgG=69.  Does it still sound like she has celiac since he didn't see any scaling? Or can the biopsy still come back positive?

 

Thanks

Theresa

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We went ahead and scoped the two oldest kids.  I wanted to know what we were starting with - in case there was serious damage.  Both came back negative from the biopsy, but the oldest was still DX.

 

Here's what I wrote on another board about our experiences:

Thanks so much.  My daugher also went right for the IV with no other prep drink before hand. I agree if you can go that way it is better.  Thanks so much.

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The EMA IgA is usually only positive in more advanced cases of celiac disease. To have a positive EMA, tTG and DGp test is a sure thing.... I bet they find damage on the biopsy - damage s usually not visible during the procedure.

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We got the biopsy results back yesterday and my daughter is positive for celiac disease. We now started the 100% gluten-free diet. I am just curious how soon after doing that will her tummy feel better? Last night at bedtime she complained of tummy pain.  She didn't get sick or anything. She was just a little uncomfortable until she got to sleep.

 

My doctor gave me the name of a dietician so I have a call into her as well. Hopeing she can answer my questions and give me some recipes and local restaurants that serve gluten-free food.

 

I am releived that we know 100% for sure that is what she has. I think if I just went with the doctors thought that she was 95%, I would have been second guessing and possibly sneaking in regular food.  Def feel relief that we know now.

 

Thanks so much for the responses on here.

 

Theresa

 

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I'm glad you have your diagnoses!  Everyone has their own healing time.  In my experience kids heal up pretty quick. :)

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She'll take some time to start feeling better and it's awesome when you look at the calendar and think "Hmm...when was the last time I heard about her upset tummy?" and can't remember.

 

I also met with a dietician, but it wasn't a good use of my time.  She didn't live this celiac so she had the book knowledge and some personal anecdotes - not the reality of changes.  Finding others in my community that had kids with celiac and/or gluten intolerance was way more beneficial.  Then we could all talk about the specifics of our local community.

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Glad you know for sure.  :)

 

It can take days to weeks for stomach issues to improve. The unlucky few take months to years. It really varies between people. Do be aware though that some celiacs go through withdrawal in the first few days to weeks of the gluten-free diet. Some will feel more tired, cranky, sore and headachey. It can get worse before it gets better, but it almost always gets much better in the end.

 

Best wishes.

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As to how long it took my DD to start feeling better: She is 4, so I sometimes have to guess what is going on inside her head. She didn't have major GI issues prior to diagnosis, and we only caught the diagnosis through routine celiac screening because she has another autoimmune disease (type 1 diabetes).

 

However, for months before diagnosis, she occasionally mentioned "tummy aches" and she had basically no appetite. It was a nightly pitched battle to get her to eat anything at all for dinner. I think that within a week of diagnosis and going gluten-free, she was back to eating normal amounts of food, which is my best barometer for when she started feeling better. Actually, these days she's not just eating normal amounts of food, she is eating HUGE amounts of food . :) It has been so awesome to see, and it has made all the hard work and expense of the gluten-free diet seem totally worth it.

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Always have gluten free "treats" on hand.  It is better to let your child make a decision about gluten free substitutes.  ;) (At least they have some control over the gluten free diet they must follow forever.)

 

You will be amazed at all the treats and snacks you children are offered, and how much time is wasted eating at school. :rolleyes:

 

My kids were too young to really put into words how much better they felt.  They just starting looking better and good energy kept them going longer, and temper tantrums were basically non existent. :)

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We noticed changes right away  - especially in mood and behavior - and then, over time, other things improved that we didn't even notice were problems.  Increased appetite, better sleep, more energy, etc.

 

He shot up three inches and his hair got thick and curly.  Weird.  He was diagnosed at age 5.

 

I was so stressed in the first few weeks, trying to figure out what to cook and getting my kitchen gluten free.  We had tacos 3 times for dinner in the first week.  Turns out, most of our favorite family recipes were easy to make gluten free.

 

It gets easier.  We are three years gluten-free and now it is like second nature.  The whole family is healthier too. 

 

Cara

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I'm glad you have your diagnoses!  Everyone has their own healing time.  In my experience kids heal up pretty quick. :)

Thanks so much.  She is still complaining of tummy ache at bedtime this week, all except one night.  I guess it will take some time.  Any good brands for bread?  My daughter loves grilled cheese sandwiches but I haven't found a gluten-free bread that she likes everytime I give to her.

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We noticed changes right away  - especially in mood and behavior - and then, over time, other things improved that we didn't even notice were problems.  Increased appetite, better sleep, more energy, etc.

 

He shot up three inches and his hair got thick and curly.  Weird.  He was diagnosed at age 5.

 

I was so stressed in the first few weeks, trying to figure out what to cook and getting my kitchen gluten free.  We had tacos 3 times for dinner in the first week.  Turns out, most of our favorite family recipes were easy to make gluten free.

 

It gets easier.  We are three years gluten-free and now it is like second nature.  The whole family is healthier too. 

 

Cara

Thanks Cara. Please let me know of any receipes your family likes.  Can you still make a pan of baked ziti or lasagna? I haven't see lasagna pasta gluten-free anywhere.  Any other brands of cookies your family likes? I made gluten-free brownies for her valentines party at school.  Thanks so much for the input.

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Always have gluten free "treats" on hand.  It is better to let your child make a decision about gluten free substitutes.  ;) (At least they have some control over the gluten free diet they must follow forever.)

 

You will be amazed at all the treats and snacks you children are offered, and how much time is wasted eating at school. :rolleyes:

 

My kids were too young to really put into words how much better they felt.  They just starting looking better and good energy kept them going longer, and temper tantrums were basically non existent. :)

Thanks so much.  How do you  handle play dates and kids birthday parites? Do you tell the mom your child has celiac and you will send your own snacks?  I also worry about going away on vacation? I saw Disney has a lot of gluten-free choices but how do you handle that? I am guessing just research hotels and restaurants near where we are going.  Thanks so much.

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    Whatever the reason that stuttering has not been reported in the medical literature in association with gluten ingestion, a number of personal disclosures and comments suggesting a connection between gluten and stuttering can be found on the Internet. Abid Hussain, in an article about food allergy and stuttering said: “The most common food allergy prevalent in stutterers is that of gluten which has been found to aggravate the stutter” (10). Similarly, Craig Forsythe posted an article that includes five cases of self-reporting individuals who believe that their stuttering is or was connected to gluten, one of whom also experiences stuttering from foods containing yeast (11). The same site contains one report of a stutterer who has had no relief despite following a gluten free diet for 20 years (11). Another stutterer, Jay88, reports the complete disappearance of her/his stammer on a gluten free diet (12). Doubtless there are many more such anecdotes to be found on the Internet* but we have to question them, exercising more skepticism than we might when reading similar claims in a peer reviewed scientific or medical journal.
    There are many reports in such journals connecting brain and neurological ailments with gluten, so it is not much of a stretch, on that basis alone, to suspect that stuttering may be a symptom of the gluten syndrome. Rodney Ford has even characterized celiac disease as an ailment that may begin through gluten-induced neurological damage (13) and Marios Hadjivassiliou and his group of neurologists and neurological investigators have devoted considerable time and effort to research that reveals gluten as an important factor in a majority of neurological diseases of unknown origin (14) which, as I have pointed out previously, includes most neurological ailments.
    My own experience with stuttering is limited. I stuttered as a child when I became nervous, upset, or self-conscious. Although I have been gluten free for many years, I haven’t noticed any impact on my inclination to stutter when upset. I don’t know if they are related, but I have also had challenges with speaking when distressed and I have noticed a substantial improvement in this area since removing gluten from my diet. Nonetheless, I have long wondered if there is a connection between gluten consumption and stuttering. Having done the research for this article, I would now encourage stutterers to try a gluten free diet for six months to see if it will reduce or eliminate their stutter. Meanwhile, I hope that some investigator out there will research this matter, publish her findings, and start the ball rolling toward getting some definitive answers to this question.
    Sources:
    1. Toft M, Dietrichs E. Aggravated stuttering following subthalamic deep brain stimulation in Parkinson’s disease--two cases. BMC Neurol. 2011 Apr 8;11:44.
    2. Tani T, Sakai Y. Stuttering after right cerebellar infarction: a case study. J Fluency Disord. 2010 Jun;35(2):141-5. Epub 2010 Mar 15.
    3. Lundgren K, Helm-Estabrooks N, Klein R. Stuttering Following Acquired Brain Damage: A Review of the Literature. J Neurolinguistics. 2010 Sep 1;23(5):447-454.
    4. Jäncke L, Hänggi J, Steinmetz H. Morphological brain differences between adult stutterers and non-stutterers. BMC Neurol. 2004 Dec 10;4(1):23.
    5. Kell CA, Neumann K, von Kriegstein K, Posenenske C, von Gudenberg AW, Euler H, Giraud AL. How the brain repairs stuttering. Brain. 2009 Oct;132(Pt 10):2747-60. Epub 2009 Aug 26.
    6. Galantucci S, Tartaglia MC, Wilson SM, Henry ML, Filippi M, Agosta F, Dronkers NF, Henry RG, Ogar JM, Miller BL, Gorno-Tempini ML. White matter damage in primary progressive aphasias: a diffusion tensor tractography study. Brain. 2011 Jun 11.
    7. Lundgren K, Helm-Estabrooks N, Klein R. Stuttering Following Acquired Brain Damage: A Review of the Literature. J Neurolinguistics. 2010 Sep 1;23(5):447-454.
    8. [No authors listed] Case records of the Massachusetts General Hospital. Weekly clinicopathological exercises. Case 43-1988. A 52-year-old man with persistent watery diarrhea and aphasia. N Engl J Med. 1988 Oct 27;319(17):1139-48
    9. Molteni N, Bardella MT, Baldassarri AR, Bianchi PA. Celiac disease associated with epilepsy and intracranial calcifications: report of two patients. Am J Gastroenterol. 1988 Sep;83(9):992-4.
    10. http://ezinearticles.com/?Food-Allergy-and-Stuttering-Link&id=1235725 
    11. http://www.craig.copperleife.com/health/stuttering_allergies.htm 
    12. https://www.celiac.com/forums/topic/73362-any-help-is-appreciated/
    13. Ford RP. The gluten syndrome: a neurological disease. Med Hypotheses. 2009 Sep;73(3):438-40. Epub 2009 Apr 29.
    14. Hadjivassiliou M, Gibson A, Davies-Jones GA, Lobo AJ, Stephenson TJ, Milford-Ward A. Does cryptic gluten sensitivity play a part in neurological illness? Lancet. 1996 Feb 10;347(8998):369-71.

    Jefferson Adams
    Celiac.com 06/14/2018 - Refractory celiac disease type II (RCDII) is a rare complication of celiac disease that has high death rates. To diagnose RCDII, doctors identify a clonal population of phenotypically aberrant intraepithelial lymphocytes (IELs). 
    However, researchers really don’t have much data regarding the frequency and significance of clonal T cell receptor (TCR) gene rearrangements (TCR-GRs) in small bowel (SB) biopsies of patients without RCDII. Such data could provide useful comparison information for patients with RCDII, among other things.
    To that end, a research team recently set out to try to get some information about the frequency and importance of clonal T cell receptor (TCR) gene rearrangements (TCR-GRs) in small bowel (SB) biopsies of patients without RCDII. The research team included Shafinaz Hussein, Tatyana Gindin, Stephen M Lagana, Carolina Arguelles-Grande, Suneeta Krishnareddy, Bachir Alobeid, Suzanne K Lewis, Mahesh M Mansukhani, Peter H R Green, and Govind Bhagat.
    They are variously affiliated with the Department of Pathology and Cell Biology, and the Department of Medicine at the Celiac Disease Center, New York Presbyterian Hospital/Columbia University Medical Center, New York, USA. Their team analyzed results of TCR-GR analyses performed on SB biopsies at our institution over a 3-year period, which were obtained from eight active celiac disease, 172 celiac disease on gluten-free diet, 33 RCDI, and three RCDII patients and 14 patients without celiac disease. 
    Clonal TCR-GRs are not infrequent in cases lacking features of RCDII, while PCPs are frequent in all disease phases. TCR-GR results should be assessed in conjunction with immunophenotypic, histological and clinical findings for appropriate diagnosis and classification of RCD.
    The team divided the TCR-GR patterns into clonal, polyclonal and prominent clonal peaks (PCPs), and correlated these patterns with clinical and pathological features. In all, they detected clonal TCR-GR products in biopsies from 67% of patients with RCDII, 17% of patients with RCDI and 6% of patients with gluten-free diet. They found PCPs in all disease phases, but saw no significant difference in the TCR-GR patterns between the non-RCDII disease categories (p=0.39). 
    They also noted a higher frequency of surface CD3(−) IELs in cases with clonal TCR-GR, but the PCP pattern showed no associations with any clinical or pathological feature. 
    Repeat biopsy showed that the clonal or PCP pattern persisted for up to 2 years with no evidence of RCDII. The study indicates that better understanding of clonal T cell receptor gene rearrangements may help researchers improve refractory celiac diagnosis. 
    Source:
    Journal of Clinical Pathologyhttp://dx.doi.org/10.1136/jclinpath-2018-205023