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How Many More Diagnosis's Will There Be

lilleroy family

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lilleroy family Rookie
lilleroy family
Posted

:o My daughter was diagnosed with celiac in mid February and we are still having extreme complications from it, she has an engy tube on steriods and now the doctor wants to switch her to a medication called 6mp and believes she has an autoimmune myopathy in the developing stages of chrons disease. We know she has hashimoto's thyroiditis, celiac and now this. How many other celiacs have numerous diseases and ongoing difficulties? My child just keeps getting worse each time we take her in? Is there anything we can do or some doctor who is educated in celiac and its complexities? It seems the children's hospital we have her seeing the GI specialist at is just stabbing at the dark and meanwhile she is not getting better even with gluten free, sugar free lactose free diet in place. HELP

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taneil Apprentice
taneil
Posted

Get on www.enterolab.com and e-mail Dr. Fine. He has Celiac Desease and may be able to help you out. When you e-mail, don't worry if you don't find his exact e-mail I am sure it will get to him. He replies usually within the day if he is in town. He is in Dallas. I don't know where you are.

bonnieo Rookie
bonnieo
Posted

Read the book:

Breaking the Vicious Cycle: Intestinal Health Through Diet

by Elaine Gloria Gottschall

There is also a web site: Open Original Shared Link

flagbabyds Collaborator
flagbabyds
Posted

I have thyroid also, auto immune disorders run together so it is likely to have more than 1

ryebaby0 Enthusiast
ryebaby0
Posted

I'm so sorry you are still on a bumpy road. My son has an egg allergy, celiac, and autoimmune enteropathy (his body thinks his gi tract is a transplant). I think I've emailed you off-list about our travails? Anyhow, you might contact the U. of Maryland's Celiac research center (find them on the net), Dr. Joseph Murray at the Mayo Clinic (although he doesn't deal with children, but he has good insights, reads his email and is very kind). We were diagnosed,stabilized and discharged from Children's in Pittsburgh, and then we had a consult with Dr. Maria Oliva-Hemker at Johns Hopkins. The CHP doctors were very glad to have us get more input from Hopkins. My son was started on 6MP (mercaptopurine) in hospital but it was dc in favor of tacrolimus (prograf, or FK506) because he was too sick to wait for the 6MP to kick in (that can take weeks to work fully, but sometimes it starts helping within days). 6MP is where they start because it has fewer side effects. Many Crohn's and IBS patients take 6MP. This is a good thing for your daughter to try, it can help. The ng tube and steroids will help stabilize her, no matter how scary it seems~the steroids are not something anyone wants her on for months and months, but my son was on them (low dose to HUGE doses) for 3-4 months with no permanent effects. Doctors don't think of ng tubes as a big deal and they are safety nets. My son was dx in Dec. '03, stabilized only in May! It is a long road. Her issues are more GI and less celiac; no offense to those with celiac "only" . Don't EVER stop asking questions and pushing. Has she been an inpatient yet? I know it's scary to think about. Your instincts will guide you. Find a _Children's_ hospital near you and get there, and get some answers. Childrens' experiences, especially with gi, need children's specialists :) Let me know how it goes. We'll be praying for you and for her. (And don't forget to eat, and sleep if you can catch some)

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    • trents
      High TTG-IgG and Normal TTG-IgA

      By trents · Posted

      Currently, there are no tests for NCGS. Celiac disease must first be ruled out and we do have testing for celiac disease. There are two primary test modalities for diagnosing celiac disease. One involves checking for antibodies in the blood. For the person with celiac disease, when gluten is ingested, it produces an autoimmune response in the lining of the small bowel which generates specific kinds of antibodies. Some people are IGA deficient and such that the IGA antibody tests done for celiac disease will have skewed results and cannot be trusted. In that case, there are IGG tests that can be ordered though, they aren't quite as specific for celiac disease as the IGA tests. But the possibility of IGA deficiency is why a "total IGA" test should always be ordered along with the TTG-IGA. The other modality is an endoscopy (scoping of the upper GI track) with a biopsy of the small bowel lining. The aforementioned autoimmune response produces inflammation in the small bowel lining which, over time, damages the structure of the lining. The biopsy is sent to a lab and microscopically analyzed for signs of this damage. If the damage is severe enough, it can often be spotted during the scoping itself. The endoscopy/biopsy is used as confirmation when the antibody results are positive, since there is a small chance that elevated antibody test scores can be caused by things other than celiac disease, particularly when the antibody test numbers are not particularly high. If the antibody test numbers are 10x normal or higher, physicians will sometimes declare an official diagnosis of celiac disease without an endoscopy/biopsy, particularly in the U.K. Some practitioners use stool tests to detect celiac disease but this modality is not widely recognized in the medical community as valid. Both celiac testing modalities outlined above require that you have been consuming generous amounts of gluten for weeks/months ahead of time. Many people make the mistake of experimenting with the gluten free diet or even reducing their gluten intake prior to testing. By doing so, they invalidate the testing because antibodies stop being produced, disappear from the blood and the lining of the small bowel begins to heal. So, then they are stuck in no man's land, wondering if they have celiac disease or NCGS. To resume gluten consumption, i.e., to undertake a "gluten challenge" is out of the question because their reaction to gluten is so strong that it would endanger their health. The lining of the small bowel is the place where all of the nutrition in the food we consume is absorbed. This lining is made up of billions of microscopically tiny fingerlike projections that create a tremendous nutrient absorption surface area. The inflammation caused by celiac disease wears down these fingers and greatly reduces the surface area needed for nutrient absorption. Thus, people with celiac disease often develop iron deficiency anemia and a host of other vitamin and mineral deficiencies. It is likely that many more people who have issues with gluten suffer from NCGS than from celiac disease. We actually know much more about the mechanism of celiac disease than we do about NCGS but some experts believe NCGS can transition into celiac disease.
    • SamAlvi
      High TTG-IgG and Normal TTG-IgA

      By SamAlvi · Posted

      Thank you for the clarification and for taking the time to explain the terminology so clearly. I really appreciate your insight, especially the distinction between celiac disease and NCGS and how anemia can point more toward celiac. This was very helpful for me.
    • Jsingh
      Son's legs shaking

      By Jsingh · Posted

      Hi,  My 7 year daughter has complained of this in the past, which I thought were part of her glutening symptom, but more recently I have come to figure out it's part of her histamine overload symptom. This one symptom was part of her broader profile, which included irritability, extreme hunger, confusion, post-nasal drip. You might want to look up "histamine intolerance". I wish I had known of this at the time of her diagnosis, life would have been much easier.  I hope you are able to figure out. 
    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      My 5yo was diagnosed with celiac last year by being tested after his sister was diagnosed. We are very strict on the gluten-free diet, but unsure what his reactions are as he was diagnosed without many symptoms other than low ferritin.  He had a school party where his teacher made gluten-free gingerbread men. I almost said no because she made it in her kitchen but I thought it would be ok.  Next day and for a few after his behavior is awful. Hitting, rude, disrespectful. Mainly he kept saying his legs were shaking. Is this a gluten exposure symptom that anyone else gets? Also the bad behavior? 
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      By trents · Posted

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