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Toddler With Suspected Celiac
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Do we have an update yet on this? Just wondered how he was doing and if he was scoped yet. After my daughter was scoped and found to be celiac, then blood was enough for the other family members. I have a high out of pocket min. and can't see paying $2400 to scope my youngest when she has a sister with it, genes for it, and her blood is high for it. (We are testing her again next month to make sure then I'll just go gluten free) As far as my husband (type 1 diabetic) and me...we had blood tested and we do not have it. No scope needed. If your son has celiac, then have a blood test. If it is positive, go gluten free. Good luck!

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Yeah, the bloods are notorious for being negative in children, its far more likely to show up in an endo - although that can be negative too, they need to take at least 11 samples, people come on here all the time saying they are negative and then revealing that the dr only took 1 or 2 biopsies. I swear - the medical profession need to get with the program regarding coeliac.

Actually - I was in a similar position to yourself, I was booked to have my endo (I had negative bloods) but some very serious symptoms. I got pregnant so had to cancel the endo, decided to go gluten free in the meantime and do a gluten challenge after the baby was born. I have basically eaten gluten once and was rushed to emergency because I was so severely ill from it. I will never get a diag now, It annoys me sometimes, but at the end of the day - I know that its gluten - heck everyone knows its gluten (all the drs and specialist) it may not be official, but it doesn't change anything even if it was official you know?

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Do we have an update yet on this? Just wondered how he was doing and if he was scoped yet. After my daughter was scoped and found to be celiac, then blood was enough for the other family members. I have a high out of pocket min. and can't see paying $2400 to scope my youngest when she has a sister with it, genes for it, and her blood is high for it. (We are testing her again next month to make sure then I'll just go gluten free) As far as my husband (type 1 diabetic) and me...we had blood tested and we do not have it. No scope needed. If your son has celiac, then have a blood test. If it is positive, go gluten free. Good luck!

What if its negative? There is a 40% false negative rate in kids under 5 and a 15% negative rate in adults.

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Well, I'm just going over the bloodwork results that came today. While the Celiac panel itself was unremarkable, a few other things stood out to me.

Apparently his celiac panel was not very detailed. He had an IgA level of 67, where normal is 21-291.

His TTG IgA level was 2 where <20 is negative, and 20-30 is weak positive.

On his metabolic panel:

His one unmistakably unusual value was his BUN/Creatinine Ratio - it was 69, and normal is 12-20. However, the BUN and creatinine are within normal ranges by themselves. And I found this on wikipedia: The ratio is useful for the diagnosis of bleeding from the gastrointestinal (GI) tract in patients who do not present with overt vomiting of blood.[3] In children, a BUN:Cr ratio of 30 or greater has a sensitivity of 68.8% and a specificity of 98% for upper gastrointestinal bleeding.

He also had slightly high chloride and low CO2 levels, both of which are not unusual when someone has issues with diarrhea. A lot of his other blood test results are within normal levels but borderline, all of which can indicate slight dehydration.

His bilirubin was slightly low, but all I can find is that this could indicate inflammation.

His AST level was borderline high - I see this is sometimes related to Celiac. ALT was normal, so his liver appears to be functioning just fine.

His alkaline phosphatase level was also borderline low, which I see can indicate malnutrition.

And finally, on his CBC, his red blood cell count was borderline low as was his hemoglobin and hematocrit, so he appears to be just barely not anemic.

His RDW count was high but MCV count was normal, which I read can either indicate the beginnings of iron deficiency anemia or a B12 or folate deficiency.

And while the normal range is 0-0.10, he had a 0.10 for his basophil count, and I see that basophils are often seen in immune reactions.

So, I have nothing conclusive, but I would say that the bloodwork indicates something gastrointestinal and inflammatory going on in his system, and Celiac is still our best culprit. 1.5 weeks left until our biopsy, so fingers crossed that we will get some answers.

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Great job looking up all of that.

His Celiac panel was not at all thorough. For a doctor that suspects Celiac, it should have been more thorough. And while his total iga was normal, it's low normal - in the area where some may say he's almost iga deficient - so iga Celiac tests wouldn't work for him.

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Great job looking up all of that.

His Celiac panel was not at all thorough. For a doctor that suspects Celiac, it should have been more thorough. And while his total iga was normal, it's low normal - in the area where some may say he's almost iga deficient - so iga Celiac tests wouldn't work for him.

That's good to know. Yes, I feel pretty frustrated with how limited a Celiac panel they did...I was really hoping, having read positive things, that they did a antigliadin test, but I know that it's a newer one. And I've disappointed that they didn't do a genetic screening, as far as I know, since that would have been suggestive one way or another and would have at least indicated that one of us was a carrier of the gene or not.

And I will look into IgA deficiency. I see that it is linked to autoimmune diseases, so I find that very interesting.

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When I've heard about doctors considering a low normal iga suspicious its generally within 10% - which would be apx. 50 for their normal range. He's still higher than that, but not much.

It would make me wonder, and request igg tests.

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When I've heard about doctors considering a low normal iga suspicious its generally within 10% - which would be apx. 50 for their normal range. He's still higher than that, but not much.

It would make me wonder, and request igg tests.

I found this article very informative, especially the fact that testing the EMA IgG antibodies yielded such accurate results in diagnosing celiac disease in individuals with IgA deficiency.

http://intl-cvi.asm.org/content/9/6/1295.full

Also, IgA deficient individuals have a 10 to 15 times higher incidence of celiac disease than the general population.

And it definitely makes me think my genes are a contributing factor, and that I need to get some blood tests run, because the symptoms of IgA deficiency are like a textbook of my own issues. Sigh.

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I found this article very informative, especially the fact that testing the EMA IgG antibodies yielded such accurate results in diagnosing celiac disease in individuals with IgA deficiency.

http://intl-cvi.asm.org/content/9/6/1295.full

Also, IgA deficient individuals have a 10 to 15 times higher incidence of celiac disease than the general population.

And it definitely makes me think my genes are a contributing factor, and that I need to get some blood tests run, because the symptoms of IgA deficiency are like a textbook of my own issues. Sigh.

Yes, I would suggest testing for you, and sooner rather than later, because it may be impossible for you to back on gluten later if you go gluten-free with your son - and while it may not be important to you (a dx vs. knowing you are better gluten-free) it may be very important for your son and the new baby.

And other family members.,.

Are they going to look at his full GI tract on the Endo or just do a Celiac biopsy? I'd ask for the full work up.

And I'd request igg and the other Celiac iga testing for your son, because of they don't see damage on scope, and you go gluten-free (and it works) you probably won't be able to challenge him.

The other thing - INSIST they take 4+ samples from the duodenal bulb. It is very important they take it from the bulb - it is the most likely place to find damage. There's an article on Celiac.com about a study and sample location.

http://www.celiac.com/articles/22683/1/Duodenal-Bulb-is-Shown-to-be-the-Best-Place-to-Find-Villous-Atrophy/Page1.html

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Well, I have left a message at my GI's office asking them to call me back so we can talk about why they didn't do the genetic testing, if it's possible to do other antibody testing, and how many biopsies Dr. is planning on taking. Hopefully I'll get a call back today, though I can't get all my questions answered until tomorrow since the Dr. isn't in til Tuesday.

I can't begin to thank people enough for helping me to know what to ask for - I want to be as proactive as possible.

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Sigh. Just got off the phone with the nurse...basically, they don't see anything wrong with his IgA, and they don't do further screening unless his biopsy comes back inconclusive. Also, the doctor will likely take 1-2 biopsies from the esophagus, 1 from the stomach, and 1-2 from the duodenum, so 3-5 total. I mentioned the study and she told me that if he took too many in such a small patient, he could more likely cause a perforation, and that he's been doing this for blah blah blah years and I can talk to him about it at the endoscope next week.

So basically, they're yet another pediatric GI that doesn't follow the most up to date recommendations and is unlikely to listen to me.

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Sigh. Just got off the phone with the nurse...basically, they don't see anything wrong with his IgA, and they don't do further screening unless his biopsy comes back inconclusive. Also, the doctor will likely take 1-2 biopsies from the esophagus, 1 from the stomach, and 1-2 from the duodenum, so 3-5 total. I mentioned the study and she told me that if he took too many in such a small patient, he could more likely cause a perforation, and that he's been doing this for blah blah blah years and I can talk to him about it at the endoscope next week.

So basically, they're yet another pediatric GI that doesn't follow the most up to date recommendations and is unlikely to listen to me.

I'm sorry.

Print out copies of the STUDY and article, fax them to his office and put a note on there that you fully expect him to test your child using the LATEST SCIENTIFIC METHODOLOGY.

Then take more copies to the endoscopy. Look him in the eye and tell him you are going gluten-free and there will be no more testing after today and he'd better run those labs NOW.

Don't let them push you around on this. It may be your last chance if gluten-free works and the test results are inconclusive. And what is inconclusive to the doctor? Is a negative biopsy negative or is in inconclusive?

You don't have to be rude, but dangit this is YOUR CHILD, not the doctor's. And you are the patient's advocate. And the patient wants this done.

Look up perforation in biopsies for your son's age. What does it say?

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This is interesting

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2538967/

And this - although they only took an average of 2.8 samples per child.

http://onlinelibrary.wiley.com/doi/10.1111/j.1651-2227.1983.tb09772.x/abstract

The patchy nature of the small intestinal lesion in celiac disease is increasingly being recognized both in children and adults [4,7,12-16]. The patchiness of lesion in various parts of the duodenum can be in terms of absence or presence of villous atrophy [4,12,13] or in the severity of atrophy [10]. Since the treatment of celiac disease requires a lifelong, strict adherence to gluten-free diet, making a definitive diagnosis of the disorder is of great importance.

In an earlier study, Bonamico et al [4] demonstrated the patchy nature of the lesion in celiac disease both in children who were newly diagnosed and those on a gluten challenge. In all 95 children at the time of diagnosis of celiac disease, the bulbar mucosa was involved showing varying degrees of type 3 villous atrophy. In four (4.2%) patients, the bulb was the only duodenal area involved with the other duodenal samples being normal. Prasad et al have reported similar findings of duodenal bulb involvement [13]. In 52 children with suspected celiac disease who underwent one bulb and one distal duodenal biopsy, all had Marsh type 3 lesions in at least one of the sites. The authors concluded that duodenal bulb biopsy was equally diagnostic of celiac disease. More recently, in a large Italian study of children with celiac disease the duodenal bulb was involved in all cases of and in some patients the lesion was only presented in the bulb with distal duodenum being normal [14]. Villous atrophy limited to duodenal bulb has also been described in adults with celiac disease [15,16].

Our study confirms this finding of distal duodenal sparing in a significant number of patients (11.4%) with celiac disease. However, in our study, of the 31 patients with abnormal distal duodenal biopsies, only 29 had abnormalities in the bulb while other 2 had normal bulb mucosa. This testifies further to the patchy nature of the villous lesion in celiac disease. It is also important to note that there could be bulb sparing in some patients, albeit few. This is in contrast to other reports where bulb was involved in all cases [12-14]. We conclude that biopsies taken from the bulb alone are not enough as they will miss some patients.

Recognizing the patchy nature of the disorder, Hopper et al further studied the number and location of biopsies required to make a definitive diagnosis of celiac disease [17]. Nine biopsies were taken; one from the bulb, four from proximal duodenum and four from distal duodenum. These were evaluated individually based on their ability to identify villous atrophy, and on their success when combined. It was determined that all of the optimal combinations of biopsy sites included a duodenal bulb biopsy.

Previous studies had demonstrated the usefulness of duodenal bulb biopsies in research settings with a single pathologist reporting while blinded. The present study is the first one to examine this practice in routine, everyday clinical care. A major difference between our and previous studies is having more than one pathologist involved in interpreting the biopsies taken from patients in our study. There were four pathologists reporting on different patients. All were experienced, academic paediatric pathologists. Also, none of the pathologists were blinded. In real life, Pathology Departments of health care institutions will have several pathologists involved in interpreting small intestinal biopsies for celiac disease. It is not known how often pathologists in academic or community hospitals do IEL counting routinely. Also, pathologists may use different modifications of Marsh criteria, although it is hoped that each pathologist follows one particular classification to keep consistency in interpretation of the biopsies. Moreover, the possibility that different pathologist interpret duodenal biopsies differently cannot be excluded. Similarly, one cannot discount the possibility of an inaccurate interpretation of the biopsies by a given pathologist. Interpretation of small intestinal biopsies for celiac disease requires experience and familiarity with the spectrum of the histological changes. Knowledge of the clinical history and the working diagnosis of celiac disease may also bias the pathologists in their interpretation of the findings. Insufficient tissue or poor orientation of the biopsy specimens can also affect interpretation. However, these phenomenon are likely to be present and persist in real-life clinical practice. It is important to point out that our study is a retrospective review of biopsy results as reported by the attending pathologist. The aid of another pathologist for a second opinion was not sought.

Based on the current and previous studies, we recommend that biopsies should be taken both from the bulbar and the distal duodenal mucosa, as these will complement each other in confirming the diagnosis of celiac disease. Accepting that villi in the bulb may be less tall, increased IELs in the presence of a positive serological test will help improve the likelihood of the diagnosis of celiac disease. We concur with the suggestion by Hopper et al that multiple biopsy strategy should incorporate a biopsy from the duodenal bulb [17]. Moreover, the bulb should be biopsied irrespective of its gross appearance. We speculate that some patients considered to have a "false-positive" serological test may, in fact, truly have celiac disease. The diagnosis could have been missed in these cases as the biopsies are taken routinely only from the distal duodenum and not from the bulb.

Conclusion

In conclusion, this study confirms previous reports that villous atrophy can be patchy in pediatric patients with celiac disease with duodenal bulb mucosa being the only area showing histological changes in some cases. The current recommendations regarding the site of biopsies need to be revised as they may lead to a false-negative diagnosis with significant implications for the patient. The optimal strategy for detecting villous changes should include biopsies not only from the distal duodenum but also from the bulb to improve the diagnostic yield. Biopsies taken from both sites can confirm histological diagnosis in all cases of celiac disease in clinical practice.

and...

The patchy nature of villous lesion in celiac disease is increasingly being recognized. The current guidelines (American Gastroenterological Association Technical Review 2006, North American Society for Paediatric Gastroenterology, Hepatology and Nutrition 2005) recommend that mucosal biopsies be taken from the second or more distal part of the duodenum for histological examination [2,3]. A minimum of four biopsy specimens is recommended. Multiple biopsies are needed to limit problems with orientation of the specimens and artefact during processing and staining.

http://www.biomedcentral.com/1471-230X/9/78

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I'm just having a thinking day today. This forum has been so helpful at understanding how to navigate the whole testing process. I am planning on printing out a couple of the studies that you have linked, as well as the University of Chicago diagnosis fact sheet which recommends 5-6 biopsies and tell him I'm expecting him to perform more than the 1-2 "standard" biopsies that he seems to routinely perform, and if he is reluctant, I'm just going to push as hard as I can to have it "done right and according to reccomendations" since this is likely the only chance they're going to get to do it. I read somewhere that Celiac children used to have a 35% mortality rate before the disease was understood, and I am not going to continue to push him along that path for a moment more than I have to. I just want him healthy, and the fact that it's only a week longer makes the waiting seem endless and at the same time, such a relief.

So, the next step, regardless of the results really, is to get DH and I screened, and I am wondering what is the best way to go about that. I do have a GI doctor, but I've only seen him once, for an endoscopy to just make sure my esophagus was functioning properly. DH has never seen a GI. However, the more I read on this board, the more I feel that I am certain to test positive for some gene related to Celiac. DH, while he has come around to being supportive of our son being gluten free, is very much into the idea that we can go out and cheat whenever we're not with DS. However, the more I consider my own history, and what I have learned on here, the more I feel that I may be Celiac or sensitive, at the very least.

I would have never connected all of it without understanding that Celiac makes you more prone to autoimmune issues in general, but I have some very suspect issues. Since early childhood, I've been prone to recurrent bouts of eczema that have never responded to anything but steroids. I've always had digestive issues, mostly constipation and abdominal cramping, leading to an IBS diagnosis when I was 18. I had recurrent ear infections, then chronic sinus infections, and now as an adult suffer from recurrent upper respiratory infections during every cold season. I am pretty short - only barely past 5'0 and both parents are taller. I had 3 years of unexplained infertility - I never explored the cause, just assumed I wasn't meant to have children until I ended up pregnant. I've suffered for years from chronic depression that never seems to resolve and doesn't respond to medications, though cognitive behavioral therapy has helped. Though my thyroid apparently is still working fine, my mother and grandmother both suffered from hypothyroidism, my mother to the point that hers were removed as I mentioned. My gallbladder, while it doesn't have stones, does seem to show "sludge" symptoms, I have been putting off a HIDA scan until I'm done with pregnancy and nursing. For the last few years esepcially, I have dealt with frequent bloating and gas, often yeasty in nature, which will give me morning insomnia. And finally, though I don't "know" of any relationship, in my early 20's, I was diagnosed with achalasia, an esophageal motility disorder. No one knows the exact cause of achalasia, there's no obvious genetic relationship, but it is thought that some sort of autoimmune response at some point destroys the nerve cells that direct the proper contractions of the smooth muscle of the esophagus.

So that's me, in a nutshell. Yes, a mess, but most of it has been attributed to my achalasia, since achalasia sufferers often have other gastric issues that get attributed to loss of smooth muscle function throughout the digestive system. But I can't help but think - is wheat the reason I've always suffered with these issues and in fact, related to my development of achalasia? And if so, would removing it from my diet completely help some of them (gas and bloating, ibs symptoms), and potentially head off other ones (like preserving my thyroid function)? DH isn't very happy with the idea, however.

Part of me wants him to get tested because his family has plenty of issues of their own - type II diabetes on both sides, chronic obesity issues all over the place on his mom's side as well as numerous family members with no gallbladder (including my husband), MS, and apparently ulcerative colitis, as I've just learned. I'm also fairly certain that he would get an IBS diagnosis if he actually pursued it. I certainly wouldn't be shocked to find a gene on his side as well, and finding one certainly might make giving up wheat a more palatable option for him to at least explore and who knows, might get his parents to get tested as well (god knows they could stand the lifestyle change).

So, with that novel written, please, share your wisdom with me about how we go about at least getting some screening done. We are in the market for a new PCP, so finding one that will help us will not be an issue.

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Any pcp can order the Celiac panel (test list you have from UC). There are even online lab services you can order them through - they send you the order and you take it to a lab like LabCorp.

As far as genetic test, ensure it checks for alpha and beta subunits ofctge genes. LabCorp does this.

If hubs is really fighting this, just worry about YOU.

I'll tell you a secret. If you and your son are tested for genes you can piece together some of his genes. A person gets half their genes from each parent - so if you know YOURS, what your son has that isn't yours belongs to HUBS.

Guess where my son got his half Celiac gene from???? Yep, hubs. NOT ME.

My two half genes didn't go to him...but he pickup one up from dear old Dad, whose eyes got HUGE when I proved to him he has at least half a Celiac gene.

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Well, it's the night before our endoscopy. I have articles printed out and portions highlighted about the importance of taking multiple biopsies, including the duodenal bulb, to diagnose due to the patchy nature of the disease, especially in children. Also highlighted are the portions that indicate that the main GI and pediatric GI professional organizations all recommend doing 4 biopsies, not 1-2, and that doctors at the U of C do 5-6 as protocol. So I will basically be asking the doctor to please follow the recommendations of his own profession.

I will also be asking if we can at least run an EMA and DGP profile, since we will be removing gluten as of tomorrow and will not have another opportunity to get those results, though I don't have much hope that they will agree to run them since they will have the endoscopy to rely on.

Mostly I'm just scared. I'm worried about him freaking out once we get there, I'm worried they won't let me stay with him until he is sedated, and I'm of course worried about the small chance that something will go horribly wrong during the procedure. At least it's early, we're supposed to be there at 7:30 am so we won't have to wait long.

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We are in the waiting area now. I'm not particularly happy with the hospital, who refuses to let me go back with my son until he is sedated. My last memory of his face is that he was about to burst into tears.

However, I do feel a good deal better having talked to the GI, who was already planning on taking 6 samples, including at least one from the duodenal bulb. Hopefully, he'll be going into surgery soon and it will all go quickly.

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Ugh. I don't have time to look up enough info. to tell you what to look for to see about Pernicious anemia diagnoses.

But you better start looking into Eosinophilic gastro intestinal issues. (this also needs to have biopsies taken because "normal" looking areas can have Eosinophils imbedded)

Hang in there MOM!

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They also did biopsies from his esophagus and stomach. EE and EG were other things that, while less likely, they were going to look at. He has never had bloody diarrhea or been a puker or even much of a spitter when he was itty, so I am hopeful that we will not have any issues discovered apart from the Celiac diganosis, which I fully expect based on all his symptoms thus far. He also isn't officially "anemic", his bloodwork numbers are just within normal range and one number indicates that he could be about to become anemic. And all of that correlates to Celiac. So I am not going to go looking for any other gut issues unless they tell me otherwise.

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Oh yes, forgot to mention - of course his gut looked "normal" upon visual examination. Luckily, I know that in a child his age, that doesn't mean anything. We have a week until our biopsy results will be available.

I started to de-gluten my kitchen today. Once again, I'm back in mourning. Every time I think I'm past the worst of it, something new happens. Getting rid of the flours in my pantry, no big deal. Getting rid of a number of my asian sauces, which all clearly state wheat products on the label? So depressing, since I know that it eliminates even more beloved recipes from things I can share with my child. Getting rid of my plastic cutting boards and containers, and my wooden spoons and mesh strainers? Fine. Getting rid of my wooden gnocchi board, a couple rolling pins, my pizza peel and stone, and my waffle iron? Heartbreaking.

And there are still so many questionable things in that kitchen that I am on the fence about. I'm sure this mourning process of giving up equipment will continue for weeks to months.

But I am getting there, one step at a time.

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Lol, tmi, but we have been gluten free for 2.5 days, and reasonably careful about fructose and lactose, and last night, he actually fell asleep without being carried or nursed, and today he had his first normal looking BM in almost 6 months! I am feeling very encouraged.

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I think he is in gluten withdrawal. Starting the day after we went gluten-free, and getting worse every day since, he has just been having epic temper tantrums and falling apart over every little thing. Hitting. I suppose I could blame it on his approaching terrible 2's (he'll be 22 months on the 8th) or the trauma of the endoscopy, but his behavior has just been off.

Looking through the forum, I see it mentioned that kids who are on the autism spectrum or with SPD's sometimes have more noticeable and pronounced withdrawal symptoms so I am thinking (or maybe hoping) that is what is going on here. His tummy seems to be bothering him a bit since going gluten-free as well, though he can't vocalize it. I think he had a growth spurt last night too. His stomach does appear less bloated already, but we still had all loose stools today.

I am considering temporarily removing all dairy from his diet to see if it helps things along. I want to speed healing as much as possible if this is how he's going to be. Does anyone have a recommendations on how long to take out dairy before trying to re-introduce?

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Argh. Back in frustration land. Got his upper GI results today...so, his esophagus showed some chronic inflammation, indicating acid reflux, though he's never clearly demonstrated such symptoms. Stomach looked fine. Small intestine...well, basically, they couldn't see clear villous atrophy. However, he did have intraepithelial lymphocytosis, with lymphocytes >20 per 100 enterocytes. Leading the list of potential diagnoses were latent celiac disease or partially treated celiac disease.

Of course, since there are other things that could also cause it, the GI is not comfortable making a Celiac diagnosis. So NOW he wants to do the full Prometheus celiac panel - he was not happy with me when I told him that we had already gone gluten-free for a week and wanted me to put DS back on gluten for a month before doing the tests, which I refused to do. I did tell him that I was happy to do genetic testing - he decided to order the Celiac plus panel anyways, though I doubt that his EMA or DGP will come back positive now.

Then I got yelled at because I only give him water and coconut milk to drink - apparently I should just give him pediasure because maybe he isn't getting enough calories and I'm just not feeding him right (meaning enough calories - nevermind that DS is putting away mixed nuts like crazy as the doctor accuses me of this). So he wants me to meet with a dietician, which is fine...I'll start keeping a food diary tomorrow, and I bet they will be shocked at his caloric intake, since he eats all the freaking time.

And we're supposed to meet again in a month. Not sure what will have changed then except that we'll have the Prometheus labs back. I'm so disgusted by all this. He seems unwilling to diagnose simply because "don't I know that it will be a total lifestyle change". Yeah, and I'd like to get started getting my son healthy, rather than just treading water with the failure to thrive label you slapped on him. <_<

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Then I got yelled at because I only give him water and coconut milk to drink - apparently I should just give him pediasure because maybe he isn't getting enough calories

I think coconut milk is brilliant, especially when compared to the chemicals that are added to pediasure.

And, when meeting with the nutritionist, be armed with information. There is still a lot of misinformation about grains and dairy being essential, even among many nutritionists. People sometimes panic when they're outside their comfort zone. Been down this road.

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Also looking at his measurements that they took today...he is now in the 2nd percentile, where he was in the 8th at his 18 month appointment, and has further fallen from the 50th to the 30th for height.

And then the GI wonders why I don't want to do another month of gluten. I just want to cry and bang my head against a wall.

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    • pablito, here is the full serum (blood) panel. Make sure your doc runs ALL of the tests on it, not just 1 or 2. Insist!!!!! YOU are in charge. Remember that. Some people test negative on the most common 1 or 2 tests they run so it's always better to have the full panel run. Anti-Gliadin (AGA) IgA
      Anti-Gliadin (AGA) IgG
      Anti-Endomysial (EMA) IgA
      Anti-Tissue Transglutaminase (tTG) IgA
      Deamidated Gliadin Peptide (DGP) IgA and IgG
      Total Serum IgA   
      Also can be termed this way: Endomysial Antibody IgA
      Tissue Transglutaminase IgA 
      GLIADIN IgG
      GLIADIN IgA
      Total Serum IgA 
      Deamidated Gliadin Peptide (DGP) IgA and IgG Remember that celiac disease is a genetically inherited disease so it's important for you to find out if you have it and if so, then your kids & all first degree relatives (siblings, parents) need to be tested every 2 years in the absence of symptoms but right away if symptoms present. Do not go gluten free after the blood work as if you get positive blood work, you will need an endoscopy which you'll need to continue eating gluten for. The pimple things may or may not be the celiac rash as there are many skin problems associated with celiacs.
    • Hi, I've been experiencing on and off left side abd pain and bloating for about 3-4 years (doctors in the past didn't help much, just said I have IBS). My new doctor did some blood work and found out  my vitamin D was low, CRP was high.  Antigiladin Igg was a weak positive. I had an endoscopy done and the doctor confirmed I don't have Celiac, but she found very small ulcers (took Pepcid for 2 weeks). She also told me I have a leaky gut and non celiac gluten sensitivity. I'm taking probiotics for the leaky gut.  So for the past 3 months I've been eating gluten free and the pain came back 2 times.  The pain is always on the left side of my abdomen. Makes me feel weak, starts with constipation and usually ends with diarrhea. Tylenol helps the pain.  I'm waiting on my food allergy tests results to see if it can be anything other than gluten. So my question is, what does a weak positive Antigiladin IGG mean if a gluten free diet is not helping?  Could the "leaky gut" cause my Antigiladin IGG to rise? Really confused here, just want to start feeling better and not have the pain come back ever again.     Thanks
    • Thank you very much for the reply and advice I assume doctors didn't know or check into this disease too much back in the early 80's or my family doctor would have easily seen these symptoms and discussed this with me then. If I do have this disease it would explain a lot about my health and overall physical discomfort all my life. Pretty sad if it is the case and it could have been prevented but thankful I know about it now. I have made an apt with my doctor so shouldn't be long before I know for sure. Thanks again for your help
    • I continue to do more research but only found 3 journal articles which discuss the reversal of the fold pattern, possibly why I can't find answers I was waiting on on my latest celiac panel to come back so here it is, expecting slight cross contamination from eating out and possible several recent dentist visits. All three tests are based on a normal scale of 0-20 being within range.  DPG IgA - 24.5 DPG IgG – 6.84 tTg IgA – 22
    • Coffee giant Starbucks looks to feature more and better dietary specialty options, including gluten-free products. Will they succeed? View the full article
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