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Toddler With Suspected Celiac


Sesara

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1974girl Enthusiast

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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beebs Enthusiast

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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beebs Enthusiast

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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Sesara Rookie

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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pricklypear1971 Community Regular

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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Sesara Rookie

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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pricklypear1971 Community Regular

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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Sesara Rookie

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.

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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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pricklypear1971 Community Regular

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.

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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.

https://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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Sesara Rookie

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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Sesara Rookie

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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pricklypear1971 Community Regular

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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pricklypear1971 Community Regular

This is interesting

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

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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.

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Sesara Rookie

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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pricklypear1971 Community Regular

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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Sesara Rookie

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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Sesara Rookie

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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mommida Enthusiast

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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Sesara Rookie

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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Sesara Rookie

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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Sesara Rookie

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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Sesara Rookie

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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Sesara Rookie

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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deb445 Rookie

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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Sesara Rookie

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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    • cristiana
      Thank you for your post, @Nedast, and welcome to the forum. It is interesting to read of your experiences. Although I've not had TMJ, from time to time I have had a bit of mild pain in my jaw, sharp stabbing pains and tingling in my face which appears to have been caused by issues with my trigeminal nerve.  I read that sometimes a damaged trigeminal nerve in coeliacs can heal after adopting a gluten free diet.  I try to keep out of cold winds or wear a scarf over my face when it is cold and windy, those conditions tend to be my 'trigger' but I do think that staying clear of gluten has helped.  Also, sleeping with a rolled up towel under my neck is a tip I picked up online, again, that seems to bring benefits. Thank you again for your input - living with this sort of pain can be very hard, so it is good to be able to share advice.
    • Julie Riordan
      I am going to France in two weeks and then to Portugal in May   Thanks for your reply 
    • Nedast
      I made an account just to reply to this topic. My story resembles yours in so many ways that it is truly amazing. I also suddenly became lactose intolerant, went a little under 10 years attributing all my symtoms to different body parts, never thinking it was something systemic until much later. I had the same mental problems - anxiety, depression, fatigue, etc. In fact, the only real difference in our story is that I was never formally diagnosed. When I discovered that my myriad symtoms, that had been continuous and worsening for years, all rapidly subsided upon cessation of consuming gluten, I immediately took it upon myself to cut gluten out of my diet completely. I live in America, and had lost my health insurance within the year prior to my discovery, so I could not get tested, and I will never willingly or knowingly consume gluten again, which I would have to do in order to get tested now that I have insurance again. But that is not the point of this reply. I also had extreme TMJ pain that began within months of getting my wisdom teeth out at - you guessed it - 17 years old. I was in and out of doctors for my various symptoms for about 5 years before I gave up, but during that time I had also kept getting reffered to different kinds of doctors that had their own, different solutions to my TMJ issue, an issue which I only recently discovered was related to my other symptoms. I began with physical therapy, and the physical therapist eventually broke down at me after many months, raising her voice at me and saying that there was nothing she could do for me. After that saga, I saw a plastic surgeon at the request of my GP, who he knew personally. This palstic surgeon began using botox injections to stop my spasming jaw muscles, and he managed to get it covered by my insurace in 2011, which was harder to do back then. This helped the pain tremendously, but did not solve the underlying problem, and I had to get repeat injections every three months. After a couple of years, this began to lose effectiveness, and I needed treatments more often than my insurance would cover. The surgeon did a scan on the joint and saw slight damage to the tissues. He then got approved by insurance to do a small surgery on the massseter (jaw) muscle - making an incision, and then splicing tissue into the muscle to stop the spasming. It worked amazingly, but about three months later it had stopped working. I was on the verge of seeing the top oral surgeon in our city, but instead of operating on me, he referred me to a unique group of dentists who focus on the TMJ and its biomechanical relationship to teeth occlusion (i.e. how the teeth fit together). This is what your dentist did, and what he did to you was boderline if not outright malpractice. There is a dental field that specializes in doing this kind of dental work, and it takes many years of extra schooling (and a lot of money invested into education) to be able to modify teeth occusion in this manner. Just based on the way you describe your dentist doing this, I can tell he was not qualified to do this to you. Dentists who are qualified and engage in this practice take many measurments of your head, mouth, teeth, etc., they take laboratory molds of your teeth, and they then make a complete, life-size model of your skull and teeth to help them guide their work on you. They then have a lab construct, and give you what is called a "bite splint." It looks and feels like a retainer, but its function is entirely different. This is essentially a literal splint for the TMJ that situates on the teeth. The splint is progressively modified once or twice per week, over several months, in order to slowly move the joint to its correct position. The muscles spasm less, stress is taken off the joint, as the joint slowly moves back into its proper position. The pain reduces each month, each week, sometimes even each day you go in for a visit. The joint has to be moved in this manner with the splint BEFORE the modification to the teeth begins. They then add to your tooth structure with small bits of composite, to keep the joint in its proper place after it has been sucessfully repositioned. Subtracting from your teeth, by grinding down bits of your natural tooth structure, is done very conservatively, if they have to do it at all. This process worked for me - after six months, my face, jaw, neck all felt normal, and I had no more pain - a feeling I had not had in a long time. It also made my face look better. I had not realized the true extent that the spasming muscles and the joint derangement had effected the shape of my face. The pain began to return after a few months, but nowhere near where it had been before. This immense reduction in pain lasted for a little over two years. The treatment still ultimately failed, but it is not their fault, and it is still the treatment that has given me the most relief to this day. Later on, I even went about three years with very, very good pain reduction, before the joint severely destabilized again. This field of dentistry is the last line treatment for TMJ issues before oral surgery on the TMJ. There aren't as many denists around who practice this anymore, and the practice is currently shrinking due to dentists opting for less espensive, additional educations in things like professional whitening, which have a broader marketability. Getting this treatment is also very expensive if not covered by insurance (in America at least). My first time was covered by insurance, second time was not, though the dentist took pity on me due to the nature of my case and charged like a quarter of usual pricing. Most cases seen by these dentists are complete successes, and the patient never has to come back again. But occasionally they get a case that is not a success, and I was one of those cases. A little over a year ago, I began seeing the second dentist who keeps my TMJ stable in this manner. The first dentist retired, and then died sadly. A shame too, because he was a truly amazing, knowledgable guy who really wanted to help people. The new dentist began to get suspicious when my joint failed to stay stable after I was finished with the bite splint and his modifications, so he did another scan on me. This is ten years after the first scan (remember, I said the surgeon saw "slight" damage to the tissue on the first scan). This new scan revealed that I now no longer have cartilage in the joint, on both sides - complete degeneration of the soft tissues and some damage to the bone. The dentist sat me down and had a talk with me after these results came in, and said that when he sees damage like this in cases like mine, that the damage to the joint is most likely autoimmune, and that, in his experinece, it is usually autoimmune. He has sent patients with cases like mine to Mayo Clinic. He said he will continue to see me as long as the treatment continues to offer me relief, but also said that I will probably have to see a dentist for this type of treatment for the rest of my life. He is not currently recommending surgery due to my young age and the fact that the treatment he provides manages my symptoms pretty well. I still see this dentist today, and probably will see this kind of dental specialist for the rest of my life, since they have helped with this issue the most. I did not inform him that I am 100% sure that I have celiac disease (due to my complete symptom remission upon gluten cessation). I didn't inform him because I thought it would be inappropriate due to not having a formal diagnosis. I was disappointed, because I had believed I had caught it BEFORE it had done permanent damage to my body. I had never suspected that my TMJ issues may be related to my other symptoms, and that the damage would end up complete and permanent. Luckily, I caught it about 6 months after my other joints started hurting, and they stopped hurting right after I went gluten free, and haven't hurt since. I of course did the necessary research after the results of the second scan, and found out that the TMJ is the most commonly involved joint in autoimmune disease of the intestines, and if mutliple joints are effected, it is usually the first one effected. This makes complete sense, since the TMJ is the most closely related joint to the intestines, and literally controls the opening that allows food passage into your intestines. I am here to tell you, that if anyone says there is no potential relationship between TMJ issues and celiac disease, they are absolutely wrong. Just google TMJ and Celiac disease, and read the scientific articles you find. Research on issues regarding the TMJ is relatively sparse, but you will find the association you're looking for validated.
    • trents
      Welcome to the forum, @SuzanneL! Which tTG was that? tTG-IGA? tTG-IGG? Were there other celiac antibody tests run from that blood draw? Was total IGA measured? By some chance were you already cutting back on gluten by the time the blood draw was taken or just not eating much? For the celiac antibody tests to be accurate a person needs to be eating about 10g of gluten daily which is about 4-6 pieces of bread.
    • SuzanneL
      I've recently received a weak positive tTG, 6. For about six years, I've been sick almost everyday. I was told it was just my IBS. I have constant nausea. Sometimes after I eat, I have sharp, upper pain in my abdomen. I sometimes feel or vomit (bile) after eating. The doctor wanted me to try a stronger anti acid before doing an endoscopy. I'm just curious if these symptoms are pointing towards Celiac Disease? 
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