The Horticulturalist

I'm curious about the U of Chicago hotline - did you just call their hotline number and they were willing to have a doc look over the results? I would LOVE a second opinion on whether to be gluten-free long-term without having to drive hours or pay hundreds of dollars for an out-of-network consult.

October,

I called the hotline earlier this week, most of the time it rang out and there was an answering machine, I did manage to speak to someone early Tuesday and I briefly gave her my history and my sons and asked if they were able to review his blood work for me, which they were happy to do.

I faxed it to them Tuesday and waited, I got an email back yesterday (Friday).

So, yes, they should be willing to look at your son's records if you can fax/email them. I don't know if they will look at previously taken biopsy slides, that would require a GI pathologist and I'm not sure if they have one on staff at the Center, but I would certainly ask.

The lady I spoke to was very nice and sympathetic, you have nothing to lose by calling them.

Have a read of this article about biopsies, I found it a bit of an eye opener. Open Original Shared Link

I'm inclined to go this route as well. Seems the most financial friendly option as well as the option with the best chance at showing conclusive results. If his tTG goes up on gluten and down off gluten then that's pretty convicing evidence gluten is causing things to happen that we don't want. I just don't really understand why it went down with no dietary changes at all.

October, I just had my son's blood results reviewed (for nothing) at the UofC Celiac Disease Center hotline, they were very helpful indeed, I can't praise them enough. I talked to them on Tuesday and faxed them the copies from my doctor, they emailed me back today.

I don't know if biopsies are kept or destroyed, but if they are perhaps one of their GI pathologists could look at your sons results?

OMG they're looking at symptoms! Fabulous advice from them. If you're unsure about the biopsy locally maybe look at more bloodwork and go from there.

Very, very helpful people! The hotline there is really a wonderful service.

Anyway, I am seriously considering planning the long drive up there, it's about 11.5hrs from north Mississipi where we live. The lady I spoke to gave me her direct office number so I'll speak to her monday about other blood test and/or the genetic tests.

I have recently found out that more than half of the family members on my mothers side has celiac disease, and because it's hereditary I would think it's safe to say that I might have it as well. I want to set up an appointment with my Doctor to get tested but from what I have been told it's hard to diagnose. Even with the Test. I have had issues all my life with my digestive tract, I don't remember the last time I had a solid stool. My doctor has tried working with me to figure it out but nothing has really helped. I am Very Lethargic especially, and when I wake up in the morning I often feel like I have a hangover with no drinks in me. I have had a fear that I might be anemic for multiple reasons which also apparently could be a "symptom"... the list goes on and on. I actually honestly fall under more than half of the possible symptoms from eating gluten.

So My only question is, should I waste more time and money getting tested or should I just go gluten free and go with my gut? I suppose that I should get tested anyways for peace of mind but I think regardless I am going to give the gluten free thing a try anyways just to see how I feel.

And most important question of all, does everyone get ill after cutting out gluten in the first few weeks? I get sick VERY easily and I have a feeling I am going to be miserable.

I'll echo what everyone else has said. I went gluten free before I realised that I should have been on it for accurate testing, now I'll never know for sure whether I have celiac although I have a severe GI response to gluten.

So go ahead and get the blood test and let us know what that says.

Got an email today from the Celiac Center at UofC, it reads as follows:

"I received Dr. Guandalini

I didn't get a chance to read your other post yet as I'm running out the door, but to answer your question here - my son (also 6) had a tTG that was considered moderately elevated (48.8 with a normal range of 0-19.9). The GI we were working with (who, as an aside, I think knows his stuff - we go to one of the top Children's Hospitals in the country and he is the director of the GI program) said there was only a 15% chance that the endoscopy would show anything useful even with the elevated tTG. As it turned out, my son's biopsies were negative - no indication of anything at all on both endoscopy and colonoscopy. We were tentatively planning a colonoscopy anyway even before the blood tests came back because we were looking for a cause for his recurrent anemia. But with the elevated tTG the GI said the endoscopy was a must, the colonoscopy was optional. We opted for both.

Thank you October for your reply. Do you have a family history of celiac? I do not, but several family members have other autoimmune disorders.

EDIT: update, just got an email from UofC Celiac Center, their doctor recommends an endoscopy for my son, based less on the weak positive and more on his symptoms (which I would say are very mild)

Will need to think about this some more.

Sorry, I just re-read you other post....it was a family history of RA not Celiac. I am a bit foggy tonight, as I am currently doing a gluten challenge and I just ate a big bowl of chicken and dumplings. Can you say GLUTEN? Oh, how I will miss dumplings.....

Yeah, I think I will persue U of C. My current medical group seems to be pretty clueless about Celiac, and I don't want to mess around when it's my little guy's health at stake.

Keep me posted!

Absolutely. I've had the misfortune of having several tests that I now know were useless, but I only found that out recently, and I've been gluten free for a year so an endoscopy is probably not worthwhile for me,

If I need to get an endoscopy for my son then I'll be going out of my way to find someone with experience in diagnosing celiac in kids. My local gastroenterologists were pretty hopeless so I won't be going back there.

Is this the only testing that they did for Celiac? There are other blood tests that should have been done at the same time, like a DGP or the older gliadin ABS. There are other conditions that can cause a positive tTg, like type I diabetes or autoimmune liver problems. I am suprised given your history of celiac in your family and your son's symptoms that the doc didn't order a more comprehensive panel.

Keep me posted on what U of Chicago says. I live in the suburbs of Chicago, and I am considering going there with my 6 year old for Celiac testing once I get my biopsy done.

I don't have a family history of celiac, I may need to get these additional bloods done. I'll see what the Chicago people say.

If I were closer to UOC then I'd absolutely take my son there, the more experienced the gastroenterologists are the better!

I posted a query previously in the forum section for kids with celiac forum here.

I called the Celiac Center at the University of Chicago a couple of days ago and they now have a faxed copy of his bloodwork, I'm waiting for a review by their doctor, it's hard to be patient!

These are the results for my 6yr old:

Immunoglobulin A 157 (range 87 - 474)

Tissue transglutaminase 4.9 (range <4 negative,4-10 weak +ve,10 and above +ve.

here are my questions:

1) has anyone else had Ttg come back in this 'weak positive' range, and if yes, were you - or your child - referred for endoscopy?

2)If you had a 'weak positive' Ttg did you then go on to have a +ve endoscopy for celiac?

I know everyone's case will be different and my son's results could be quite different to yours, I'm just interested in your stories.

Thanks!

Bear with me, new to this...but I seem to be gleaning from this forum that there are some tests better than others for Celiac (and I could be wrong!).

I'm taking 6yr old in tomorrow AM for test. Do I trust the ped to know what to do, or do I just tell them the exact test we would like done? My little guy is deathly afraid of needles, so there is NO way I want to have to do this twice.

Anyone have the lowdown on latest greatest test?

Thanks.

Did I read in another post that you are in NYC? perhaps the people at the Celiac Disease Center at Columbia can offer some help for you? Open Original Shared Link

If his blood work comes back positive,or in the 'weak' positive range I'd absolutely contact a place like that with experienced pediatric gastroenterologists who are knowledgeable in this area.

During my colonoscopy, my doctor took biopsy from my inflamed terminal Ileum (lowest part of small intestine). Can celiac disease be diagnosed from a biopsy of that area, or does the biopsy HAVE to come from the top of my small intestine via the stomach?

Technically, yes, it can be diagnosed that way.

The gold standard test, however, is with an endoscopy and several biopsies. Have a read up about it on a website like the Mayo Clinic of the Uni of Chicago Celiac Disease Center. I've read that it's better to have someone with some experience in diagnosing celiac do the endoscopy, I also read that many GI Docs do not take sufficient numbers of biopsies to give an. accurate diagnosis

Out of shroomie's list, I would specifically ask for anti-EMA IgA and anti-DGP IgG. EMA is very, very specific, an I completely agree that the DGP is looking like the most sensitive test out there.

Allergy to tree nuts will not skew his results and heck yes, you should pursue this!

Thanks Skylark! I'm hoping that the Chicago place can answer my questions,I'll let you know what they say.

The complete celiac testing panel is considered to be:

• AGA (antigliadin antibodies)-IgA
• AGA-IgG
• tTG (anti-tissue transglutaminase)-IgA
• EMA (anti-endomysial antibodies)-IgA
• DGP (deamidated gliadin peptide)
• Total serum IgA

Of these tests, the new DGP is considered by some doctors, especially Dr. Rodney Ford (a pediatric specialist) to be the most accurate in testing children. I would suggest you try and get this test run.

Mushroom, thank you.

My son just had the Iga and TTG only. I have been reading on the website for the University of Chicago Celiac Disease Center, they have a hotline and will try to call Monday to see if someone can help interpret the results.

#3 - Pursue it.

ALL of my kids and grandkids had negative celiac panels. Mine was only marginally positive at 43 years old - turns out I had serious intestinal damage and celiac was diagnosed by biopsy.

Back to kids...they all had negative panels and ALL improved gluten-free. We chose to eliminate gluten as a test rather than push docs to endoscopy on them.

Good Luck to you!

Thanks to everyone who replied. I am trying to find out online if his "mild positive" result would be considered significant by Drs who are more expert in celiac, but so far I'm not finding anything.

I am very reluctant to start a gluten free diet for him right now given his vague symptoms and the fact that it would rule out the chance for accurate diagnosis in the future.

A little bit of background on me, for the last 18 months I have a post infectious IBS type illness, my celiac blood work was -ve. I had a colonoscopy early on, however the doctor only took biopsies of the large bowel which is pretty useless for diagnosing celiac, I thought that's what he was looking for but it looks like we had our wires crossed. I only got copies of the lab report for that this week to give to another gastroenterologist who is helping me now, I have a two week course of xifaxan that I'm about to start taking today.

I've been on a gluten free diet since then and so I feel like I've missed my window of opportunity for potentially diagnosing celiac. I do have HLA-DQB1 0302 and HLA-DQB1 0202.

I also have a paternal aunt and a first cousin (also on my fathers side of the family, she's the daughter of his other sister)with rheumatoid arthritis.

So anyway, given all that history I wanted the blood panel for my 6yr old who appears well, but is much smaller than his older brother was at the same age. He regularly has mild diarrhea, complains of 'sore tummy' and has headaches.

The results are as follows:

Immunoglobulin A 157 (range 87 - 474)

Tissue transglutaminase 4.9(range <4 negative,4-10 weak +ve,10 and above +ve.

The pediatrician says it's probably nothing to worry about,that's what the receptionist told me when she called this morning.He eats gluten every day, I'm the only gluten free person in the house.

So my questions are

1) Are there other blood tests that may shed some more light on this and what are they?

2) He has an allergy to tree nuts, could that skew the blood results?

3) should I pursue this further or do you think that his levels are low enough that I have nothing to worry about?

Thanks in advance!

Just wondering if any of you have found, or heard of, any GI docs that would acknowledge the possibility of non-celiac gluten intolerance? From just reading around the internet it seems to be mainly naturopath type docs that would be willing to consider this.

I know my own doc probably isn't one who would consider this, given that he thinks it's IBS as I have -ve on all my tests.

thanks

When you are done with any conventional testing do get yourself gluten and casien (dairy) free. Your going to feel a lot better once you are.

Thanks, I am already gluten free and will add in dairy of course.

Just got my Enterolab results in a few moments ago.

I can understand the first part but will have to do some reading on the genetic stuff, I'm posting it here to see if anyone here speaks genetic

Thanks for your input

Fecal Anti-gliadin IgA 40 Units (Normal Range is less than 10 Units)

Fecal Anti-tissue Transglutaminase IgA 22 Units (Normal Range is less than 10 Units)

Quantitative Microscopic Fecal Fat Score 1827 Units (Normal Range is less than 300 Units)

Fecal Anti-casein (cow

So I'm still waiting for Enterolab results, hopefully next week, I posted my full story a few days ago here if you're interested

Anyway about 2 weeks ago (about 1 month into gluten free diet) we went on a trip to Atlanta to see Dave Ramsey Live, I'd booked this way back before I got sick and had been looking forward to it for a long time.

We had sushi for lunch (no soy sauce) when we arrived, and then ate at a restaurant with a gluten free menu. I had no immediate symptoms that I was aware of, we went to the movies but I started to feel just generally unwell and we left the movie theatre early.

back at our hotel I still felt bit off but no GI symptoms to speak of. Went to sleep and woke a few hours later with the worst headache I've ever had. I'm not someone who's prone to headaches, so this was a bit of a shocker. I'd also not taken any medication with me that would work for a headache so I suffered on for a few hours.

The next day I felt like I had jetlag, it was really grim. We left mid afternoon on the long drive home, by nightfall (about 1 hour from home thankfully) I started to feel REALLY off in the car, slightly nauseated, GI symptoms and a lot of anxiety with it. It was awful, and lasted all the way home. I felt rubbish the next day also, nothing acute just tired and groggy.

So today I had been thinking about the trip and had a lightbulb moment when I realised that I'd eaten sushi made with those fake crabsticks which are just gluten and fish mush I think.

So do you think that eating a couple of these sushi rolls would be enough to make me ill over a few days? And the headache, could that be part of it? I should add that I had a cheeky wee glass of white wine that night before I went to sleep, but that's not normally a problem

Thanks,

So I had the colonoscopy, the doctor said he didn't see anything but he took a biopsy anyway. My friend was with me when the doctor spoke with me afterwards, apparently he mentioned the dreaded IBS as the likely cause,(I don't remember anything he said)

So, I'm not really sure what to do next. The doctor was very nice and all that, but I'm not happy with the IBS label at all. I guess I'll wait and see if the biopsy is clear.

Welcome to the board.

You do have quite a significant family history. Apart from your father's GI problems, gallbladder problems are common amongst our posters, family history of bowel cancer is significant, as is the rheumatoid arthritis. And it's all on the same side of the family.

It sounds like you are in the early stages of celiac, where there are not yet enough antibodies to form a diagnosis. However, there may be some inflammation in your small intestine (or there may not, especially if you have been gluten free for a while). Nevertheless, I think it would be good to ask the gastoenterologist to do an upper endoscopy at the same time as the colonoscopy despite the negative blood work. We see various combinations of results - blood negative, endoscopy negative; blood positive, endoscopy negative; blood negative, endoscopy positive; both positive; both negative. And yet, with all these results, so many people feel bettter (not everyone) when they decide anyway not to eat gluten. So regardless of the outcome of your testing, I would certainly recommend you continue with the gluten free diet and give it a good three-month trial.

Do let us know how your testing goes, and what your Enterolab results show.

Thank you both for your reply, I will let you know what, if anything, shows up on Tuesday. The Enterolab stuff was sent away about 2 weeks ago so hopefully not long for those results.

I agree on the IBS, it feels a bit like I'm being fobbed off. If he insists on the IBS label I think I'll have to find another GI doctor.

In the meantime I'm using the Vitamin D deficiency as a good excuse to read books in the sun

Hello all,

This is my first post here, though I have been reading a lot here for the last few weeks. I hope I am posting in the correct forum, if not maybe one of the moderators can move it.

Anyway, I wonder if I might give a brief rundown of my symptoms/ history so far and see if anyone can shed any light on my symptoms. I have no prior history of allergies or known food intolerance.

So, back in March I had eaten out with my husband, steak and baked potatoes. About 2 hours later I had diarrhea which turned completely watery very quickly. I felt flushed, hot and shaky but I did not have a fever, nor did I have any abdominal pain or cramping. After taking 2 immodium initially and then 1 more about 1/2 hour later, the diarrhea cleared up within about an hour of taking the medication. I went to bed after that and more or less went back to normal the next day though I was more tired than usual. I had a very similar episode about 10 weeks later at the end of May.

About 9 weeks ago It happened again, only this time I felt very unwell - wiped out, no energy, lack of appetite, tearful - for about 2 - 3 days afterwards and not fully recovered for about a week. Since then it has happened on average about once a week. I have seen an internal medicine doc who tested for parasites, bacteria, celiac and so on, all negative.

I am scheduled for a colonoscopy on Tuesday (oh joy...) with a Gastroenterologist. IBS has been mentioned of course, but I'll wait and see if he sees anything.

I have tested my vitamin D levels via a lab online and they are low (28) and I have also done the stool and gene test thingy for gluten and casein from Enterolab, I am still awaiting these results.

I have been following a strict gluten free diet for the last 3 weeks, I had a bad diarrhea episode about 5 days into it, but since then I have not had any major GI symptoms. I still feel generally cruddy and tired, but no bloating and trapped wind which had been a daily occurrence prior to that.

So here is a list of my typical symptoms when I have a diarrhea episode and in the days following:

* Diarrhea

* No abdominal pain or cramping

* flushed/feeling hot - no fever

* Acute irrational anxiety/tearful while this is happening (I'm not normally anxious)

* Only ever happens in the evening

in the days after:

* Very fatigued, a trip to Walmart would be very difficult for example.

* tearful ( in the evening mostly)

* lack of appetite, but some of that is related to worry about what to eat.

Family history:

I have no diagnosed medical problems and am not overweight.

My father (65)has had hiatus hernia, gallbladder removed, has chronic fatigue. Suffers from gas and bloating and constant GI grumbles.

One of his sisters has had bowel cancer, her adult daughter just been diagnosed with rheumatoid arthritis as has my dads other sister, don't know if that has any bearing on anything.

Thanks for listening, sorry it was so long.