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Jmun5

Basically celiac, but not quite

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My 15 year old daughter had the wheat zoomer test and the results said that she does not have celiac, but she did test high for the gluten and non gluten part of wheat. They said that her body is creating an autoimmune response at the peptide level. It was explained that basically it's just like celiac but without the small intestine damage. Has anyone heard of this before? Is there a name for it? My daughter has several celiac symptoms, eczema, reflux, extreme fatigue, constipation, upset stomach, anxiety. Symptoms have gotten worse over the past year. She sees her doctor in a couple days, so I'm sure we'll get more information. Just curious if anyone else has gotten this diagnosis and if there is an actual name for it. 

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42 minutes ago, Jmun5 said:

My 15 year old daughter had the wheat zoomer test and the results said that she does not have celiac, but she did test high for the gluten and non gluten part of wheat. They said that her body is creating an autoimmune response at the peptide level. It was explained that basically it's just like celiac but without the small intestine damage. Has anyone heard of this before? Is there a name for it? My daughter has several celiac symptoms, eczema, reflux, extreme fatigue, constipation, upset stomach, anxiety. Symptoms have gotten worse over the past year. She sees her doctor in a couple days, so I'm sure we'll get more information. Just curious if anyone else has gotten this diagnosis and if there is an actual name for it. 

I have no idea what that test is.  That is not a test for Celiac. Gluten intolerance does not cause an autoimmune response.   Maybe take her to a medical doctor for a Celiac blood panel - but only if she is currently eating gluten.  

 

http://www.cureceliacdisease.org/wp-content/uploads/FactSheet4_Antibody-Blood-Tests.pdf

http://www.cureceliacdisease.org/faq/what-is-the-difference-between-gluten-intolerance-gluten-sensitivity-and-wheat-allergy/

 

 

Edited by kareng

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Never heard of that test. There are certainly non Celiac reactions to wheat and gluten but whatever it is it seems clear to me your daughter needs to eat gluten free if you are sure that wheat/gluten are causing these symptoms.

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From what I am seeing, this is a test that costs $199 to $399 & you can go up to $599 for a package deal, by a company called Vibrant America which is somehow also connected to Vibrant Wellness. Seems like a Dr. (:rolleyes:) Joseph Debe pushes it. He is not a medical doctor at all; instead he is a nutritionist calling himself Dr.

 

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The naturopathic doctor that my daughter goes to is the one who ordered the test. We switched to a naturopath because the medical doctors who diagnosed the eczema, reflux, vocal cord dysfuncion (caused by reflux), etc. all treated the symptoms and didn't help figure out what was causing the autoimmune issues she was having. We started by having a food sensitivity test, and then they recommended the wheat zoomer test based on results of the food sensitivity test. I am aware that this test is not one that is used by medical doctors, but like I said, we went away from the medical doctors because all they wanted to do was prescribe pills and creams. They also didn't have any explanation for her extreme fatigue. 

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Here is a link to an article that appears to be unbiased, explaining the wheat zoomer test. It is fairly new technology. This is what our naturopath recommended. 

https://www.holisticprimarycare.net/topics/topics-a-g/digestive-health/1880-the-wheat-zoomer-a-game-changer-for-gluten-testing.html

Edited by Jmun5

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Unfortunately, there are  no validated  tests for Non-Celiac Gluten Sensitivity/Intolerance accepted by Gastroenterology Associations and Celiac Centers.  

https://www.beyondceliac.org/celiac-disease/non-celiac-gluten-sensitivity/gluten-sensitivity-testing/

 There is testing for Celiac Disease which measures antibodies (blood test) and intestinal biopsies (via endoscopy).  If negative for celiac disease, a trial gluten free diet may be ordered by a Doctor.   

Karen gave you the links for appropriate testing, but again, your daughter would need to be on a full gluten diet.

Why get tested for celiac disease?  Let me tell you my story.  My hubby’s GP and my allergist recommended that he trial a gluten free diet without testing him for celiac disease.  The gluten free diet worked.  But he would be the first to tell you that when I was diagnosed with celiac disease, I have received way more medical, family and friend support that he has experienced.  My results also enabled the rest of my family to get easily tested.   I suffered from anemia and had no GI issues when I was diagnosed.  Without that definitive test, I would have balked at going gluten free.  I knew just how hard the diet can be!  Also, years later, I experienced stomach issues.  I thought I was getting gluten into my diet somehow.  My GI ordered another endoscopy.  My villi have healed, but I now deal with Chronic Autoimmune Gastritis which is unrelated to celiac disease.  Nice to know that my endoscopy improved and that I do not have cancer, SIBO, H. pylori, etc.  

If your daughter has not eliminated gluten, ask the Naturopath to run the antibodies blood panel — the complete one.  Consider a GI consult if you all really suspect celiac disease.   

I understand your frustration.  It is a shame your daughter has experienced sin unsupportive medical doctors.  

I hope she feels better soon. 

Edited by cyclinglady

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Thank you for the response. I believe the test our doctor did was the antibodies blood panel. But the type our doctor uses, is considered more complete, also testing for other issues. Again, this is a test that is probably only used in the wholistic doctor universe. A gastroenterologist probably doesn't use it. 

The results of the test she had done showed the IgA and IgG levels within normal ranges. Also within normal ranges was the Transglutaminase, the tTG, and the DGP, so this is why they said it isn't celiac.

Where she tested high, and the reason the doctor said no more gluten, was the Gliadin panel, the Glutenin panel, and the non-gluten wheat panel. Those were all high. They also do an intestinal permiability (leaky gut) panel and she tested high there. 

When I asked if it was a gluten sensitivity or allergy, she said no. Her body makes antibodies to wheat and gluten at the peptide level. 

I am wondering if going to a naturopath was the right path for us to take after reading the comments here. Watching all our doctors just treat symptoms and never try to get to the root of the problem is the reason I decided to try something different. My daughter is a three sport athlete and was having a hard time keeping up in basketball this winter because of extreme fatigue. The reflux is so severe when she runs that she feels physically sick. She is tired and miserable during sports. I've had breast cancer twice, and same thing. Not one doctor discussed lifestyle change with me or made any suggestions. Even when I asked for help, they assured me that I didn't really have any risk factors, and it was basically a fluke. It's all very frustrating. 

 

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Wow!  She has been through the ringer.  Keep in mindthat some 10% of celiacs are seronegative.  In that particular case, a GI can go straight to an endoscopy.  At the very least, the cause of her reflux should be investigated.  I suffered from it and as I mentioned before, it was chronic gastritis and not celiac disease (which is in remission).  Reflux can also be EOE and that can can eczema and fatigue.  

http://www.aaaai.org/conditions-and-treatments/related-conditions/eosinophilic-esophagitis

You can trial the diet and possibly order a genetic test.   Some 35% of the population carries the genes for celiac disease but only a tiny few actually develop celiac disease.  At least you would know whether or not she has the potential.    

I was sure my niece had celiac disease.  She went through 4 Gastroenterologists.  The final one ordered a pill camera and discovered Crohn’s well beyond the reach of both scopes.  Why am I saying this?  If your daughter has an autoimmune disorder and it is not celiac disease, the gluten free diet might help a bit, but it will not cure other autoimmune issues.  

You could try the diet.  You have nothing to lose.  It is a lifestyle that can be difficult (but doable) but your daughter has to have 100% buy-in.  

Good luck on her sports!  Wow!  Three!  I hope she can keep it up.  Two was the most my kid attempted.  Now her focus is on music.  No time to do everything.  

Most doctors get little or no training on diet or exercise in medical school.  This is slowly changing.  I am sorry that you have had breast cancer.  If anything, celiac disease has made my family more food aware.  We focus on eliminating or reducing processed foods.  I think the old Standard American Diet has not be good for any of us.  

Edited by cyclinglady

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If you look up what Wheat Zoomer tests, it does include the celiac auto-antibodies, but also antibodies to the parts of gluten themselves.  Prior to the tests for auto-antibodies, antibodies to gluten were the go to blood test for screening for celiac disease.  But it’s not as specific to celiac, so they are no longer done in standard labs in the states (this is according to my daughter’s GI doc at U of C).  In research labs, however, these tests are being employed (particularly in Europe) because it is suspected that the antibodies to gluten cross react with our own tissue and are a possible precursor to auto-antibody production.  That is the thinking with gluten ataxia at the moment (I have been in contact with Dr. Hadjivassilou about the topic).  The only test for gluten ataxia is antibodies to gluten and resolution of symptoms on a gluten-free diet. 

So there is still value in the Wheat Zoomer test. 

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Again, thank you so much for the responses. We met with my daughter's naturopath today and she discussed the blood work (wheat zoomer test) and how she had a severe reaction to both the gluten and non gluten part of the wheat. She also has leaky gut. She wants her to do a grain free diet for a month, also no dairy since that makes her feel sick. It's basically a Paleo diet, which I'm very familiar with. After a month, she can have rice and corn again. She also gave her some supplements. Vitamin D, probiotics, etc. I am really hoping this helps to heal her gut. I really like the naturopath, and feel that she has been more helpful than the pediatrician and specialists we've seen. 

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22 hours ago, cyclinglady said:

Wow!  She has been through the ringer.  Keep in mindthat some 10% of celiacs are seronegative.  In that particular case, a GI can go straight to an endoscopy.  At the very least, the cause of her reflux should be investigated.  I suffered from it and as I mentioned before, it was chronic gastritis and not celiac disease (which is in remission).  Reflux can also be EOE and that can can eczema and fatigue.  

She has had chronic reflux since elementary school. We didn't even realize it until 6th grade when she was struggling to breathe during sports. They tried inhalers for asthma, but that didn't work, so the pediatrician sent her to a specialist at the Cleveland Clinic who diagnosed vocal cord dysfunction, caused by the reflux. He taught her exercises to teach her how to control her breathing during sports, which was super helpful, and prescribed Prilosec, which was not helpful. He never once told us that reflux isn't normal for a child and we should try to figure out what was causing it. The pediatrician knew about the reflux and eczema, and never suggested we try to get to the root cause. It took me awhile to put it all together, but the naturopath has been helpful, and I am hopeful my daughter will get better. (Also, she was sick with fever and other issues three times this winter when no one else in the family even had a sniffle.) 

  

 

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I read online some about the wheat zoomer test.

The standard way to diagnose celiac disease is to measure the level of antibodies in the blood combined with a biopsy.  All celiac organizations say that that is how celiac disease should be diagnosed. I am not sure but I don't think the Zoomer test does this.

 I am skeptical of the zoomer test. It probably hasn't been tested scientifically. I don't think any real doctor would recommend it. Wheat Zoomer is being sold by a company and they may have overstated its abilities.

From a website about what zoomer:

"The company states that this new blood-based test can detect wheat sensitivity, particularly in cases where a patient shows persistent signs and symptoms suggestive of gluten intolerance, but the standard celiac test comes back negative for gluten sensitivity."

https://www.holisticprimarycare.net/topics/topics-a-g/digestive-health/1880-the-wheat-zoomer-a-game-changer-for-gluten-testing.html

There is a new test for measuring auto-antibodies after someone has been gluten free for a long period of time. I would go with the standard testing though if possible.

 

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It absolutely DOES test for celiac antibodies. Those tests are scientifically validated and a part of the panel.  It also does test for antibodies to other parts of wheat (including gluten).  Those tests are being used in research labs as I type. 

The controversy lies in what exactly those tests mean.  High levels of antibodies are technically meaningless if you can’t confirm that they are causing the problems you are experiencing. That is pretty much the problem with these tests being sold by these companies. They promise you clarity that just doesn’t come with the results.  But if you do a survey of the research, high levels of antibodies to gluten definitely correlated to autoimmune disease.  It’s just that correlation does not equal causation.  It is actually pretty unique and amazing that gluten has been unequivocally been demonstrated as the cause of celiac disease.

But I can tell you that when my daughter was negative for celiac disease several years ago her GI doc at U of C suggested testing for antibodies to gluten as a possible indicator that she has NCGS.  But at that point it was meaningless to us since clearly she has problems with gluten and it wouldn’t give us anything more definitive in terms of diagnosis and management. 

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And another point about Wheat Zoomer. It tests for the 3 different tTG autoantibodies: ttg2, ttg3, and ttg6. The celiac panel tests for ttg2 autoantibodies. Dr. Hadjivassilou’s research has implicated Ttg6 autoantibodies in neurological disease, and I think I have seen tTG3 in relation to DH. Some very respected researchers (Dr. Marsh, Dr. Hadjivassilou, Dr. Volta) have recently criticized the overly narrow approach to diagnosing celiac disease (only looking at ttg2, for example).  In fact I recently saw a talk given by Dr. Fasano where he specifically mentions antibodies to gluten and their usefulness in identifying people with gluten sensitivity (and stated that how ridiculous it was that they threw those tests out for the narrow use of the ttg2 test).

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Oh, okay I see what you are saying. It looks like the standard blood tests for celiac disease are included in the wheat zoomer test. 

An idea might be to get her tested, if you haven't already for vitamin deficiencies. Autoimmune problems can make it difficult for the gut to absorb vitamins.

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I think wheat can cause other types of auto-immune diseases besides celiac disease. The line between celiac disease and NCGS can be blurred in some cases.  There are definitely other types food sensitivities. Dairy consumption increase someones chances (slightly I think) of developing type one diabetes. Type one diabetes is an autoimmune condition.  It is quite possible some or all of the symptoms you mentioned could be caused by wheat even if it isn't celiac disease.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4586534/

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I wish I could show you her test results. It's actually very interesting, and addresses all her issues. It showed she produces antibodies to TG3, which are associated with skin related conditions. She's had eczema for years. It also showed she produces antibodies to TG6, which is associated with neurological issues, which could explain her headaches and anxiety. The Gliadin panel is interesting. She was very high on this. It says, "If a person has elevated antibodies to Gluteomorphin or prodynorphin, they may have severe neurochemical reactions to gluten and also create what is called a gluteomorphin withdrawal response." Shortly after my daughter started the gluten free diet, she started complaining that she felt awful. I asked her what hurt and she said, "Everything." Over the next few days, she had headaches, would get really hot (like hot flashes), dizziness, achy joints/muscles, fatigue, and was very irritable. I have no doubt she was going through withdrawal. When I emailed the doctor yesterday to tell her how awful she feels, she told me she wasn't surprised based on the Gliadin panel results. They also believe she has leaky gut because of the results of the Intestinal Permeability Panel. She is creating antibodies to actin, and has increased levels of zonulin/anti-zonulin antibodies and lipopolysaccarides (LPS) antibodies. This all points to leaky gut. 

I know some of you are skeptical of the wheat zoomer test, but I find it all fascinating. All of my daughter's symptoms can be explained through this test. They don't believe it's celiac because the total IgG and IgA are in the normal range, as are the transglutaminase IgG and IgA and the DGP IgG and IgA. I asked the dietician at the lab how what my daughter has is different from celiac. She said when a person has celiac, their body attacks the small intestine. My daughter's body is still in attack mode, but it's attacking other things, like her nervous system. She mentioned in some people, it's the thyroid. I guess we'll know for sure if it's wheat/gluten if she doesn't start feeling better over the next few months. Anyone know how long, on average, it takes for someone with gluten issues to feel better once they cut it out of their diet?

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 I have read about different types of antibodies to wheat causing problems. I can also see how some unrelated medical problems might cause an increase in someones wheat sensitivity. NCGS is hard to study as everyone is very different. What works for one person may not work for another. 

It is not normal for someone (if that person has no medical problems  is not celiac, does not have NCGS etc) to have withdrawal symptoms after going gluten free.  Gluten should not interfere with the brain or nerves in any way. There are people on this forum that have had it though. Some of them have ataxia or schizophrenia. I don't know of anyway to know if a gluten free diet will work or not ahead of time. 

For celiac disease most peoples gut recovers quickly on a totally gluten free diet. For NCGS there is really no standard time.  IGG antibodies can remain in the body for a long time. A six month diet is recommended. Here are some links that might be relevant. 

https://celiac.org/celiac-disease/understanding-celiac-disease-2/diagnosing-celiac-disease/screening/

http://www.mdpi.com/2072-6643/9/10/1129/pdf

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2899772/

https://chriskresser.com/aip-for-ibd-the-paleo-autoimmune-protocol-and-inflammatory-bowel-disease/

 

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    Thanks Posterboy, that was interesting information.  I believe that I had read something elsewhere about tetracycline, at least, being used instead of, or along with, Dapsone for severe or refractory cases of DH. Unfortunately, even if I had medical insurance (which I do not), and had a regular doctor who was even willing to recognize and accept my condition for what it is, I don't know what kind of luck I would have in persuading that hypothetical doctor to give me a particular and non-sta
    Healthysquirrel,  Please have your doctor check your Vitamin D level!   Vitamin D deficiency is related to vertigo https://www.ncbi.nlm.nih.gov/pubmed/27386060 Vitamin D can help with high IgE https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5263170/ Low vitamin D and low ferritin are tied https://www.ncbi.nlm.nih.gov/pubmed/29385099 Dry eye problems including blepharitis can be helped with vitamin d and vitamin a https://www.ncbi.nlm.nih.gov/pmc/articles
He's still going to have to eat gluten even for an endoscopic biopsy. 2 weeks minimum. Plus guidelines say no dx on an endoscopic biopsy alone - you have to have the positive blood to go with it. Even that 2 weeks will deposit more antibodies under his skin if he's got dh.  Let me put it this way. The gut damage is the gut damage & if he's celiac & it sounds like he is but we don't have labs to prove it, then there is a treatment for it. Only 1 treatment for it. A very strict gluten
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