Gluten Intolerant but not Celiac?
 

Hi. I am not a regular of Celiac forum but very much a regular of PN forum.

My questions are:
1. Is it possible that one is gluten intolerant but not celiac or vice versa?
2. Could it be possible that celiac/gluten only affects the nerves and nothing else?

I have yet to take the test for Celiac disease. I don't have any of the "typical' symptoms of gluten intolerant like stomach aches, cramps, diarrhea or constipation,etc. (Or, maybe I am not just aware of anything else that is happening to my body.) But I have the typical symptoms of a PN.


Thank you for your help.

Yes, it is possible to have gluten intolerance but not be genetically Celiac. The reverse is less likely and IMO not possible. Gluten intolerance is when the gluten peptide escapes into the blood stream from leaky gut and then causes reactions at various tissue sites and damage. There was a study done in 1999 showing damage from NSAIDs to the GI mucosa in the intestines may allow peptides to cross when they normally would not. Hence gluten intolerance may be ACQUIRED and be from various drug uses.

At the Gluten File site are papers about gluten and PN:
http://sites.google.com/site/jccglut...eralneuropathy
The Gluten file is also at Facebook with discussions.

2) yes possible. But you may not feel some other effects yet, if your case is mild. Some gluten effects are subtle. Brain fog,
fatigue, thyroid disease, etc.

I'd recommend you read The Gluten File. It is a great resource and very complete with explanations.

As I understand it, the "scope" looking for villi damage does not always reveal it, even in Celiacs. Glenntaj here knows all the tests, and will hopefully come on here with details.

MrsD, thank you. Its so nice "seeing" you on Celiac forum.
You know Mrs.D, I blame Gabapentin for always feeling tired, difficulty concentrating and oftentimes anxious. The more I read the Gluten File, the more I wonder if I am gluten intolerant. It is difficult though to put finger to one culprit because I also h ave thyroid problem. I heard abouot gluten intolerant but I have never really given so much attention to it because I never feel the more common abdominal problem.

Can colonoscopy detects the villi damage? The reason I ask is because I had colonoscopy last May 2011 and there was no mention about it.

I will have my test for celiac this week. I will post the result here for comments.

Thank you.:hug:

Mary

No, the villi are mostly in the small intestine.

I've read over and over at the Gluten File that a negative scope is not 100% reliable.

But the damage gluten does in the sensitive person can be pretty global. Jcc's daughter had seizures as an example when young and eating gluten. They went away when she went gluten free many years ago.

I read the Gluten File - I never gave too much attention to it until now. I was talking with my friend from Canada today and she mentioned about her nephew that for years he was always feeling sick. In and out of the emergency room without proper diagnosis. After 3 years of recurring medical expenses, the parents experimented on gluten-free diet, for just 2 months the boy improved! Now the boy is 7yrs old, healthy and very active.

I will have tests on IGg/IGa antigliadin antibodies and tissue transglutaminase.

Thank you.

It is certainly possible--
 

--for neurological symptoms to be a presenting symptom of autoimmune reaction to gluten.

Peripheral neuropathy is one of these (gluten ataxia and seizures are others), and it is prevalent enough that the researchers who have done the work in this area (mostly Latov,Chin, Green, Fasano and Alessio in the US, and most importantly, Hadijvassiliou in Finland) recommend a test for the antibodies in anyone with an otherwise unexplained neuropathy. In fact, there is some evidence that people who present first with neurological symptoms may have a different genetic profile than the "typical" celiac who presents with gastrointestinal issues (the Gluten File details Hadijvassiliou's work in this area).

There are no appreciable villi in the large intestine--was the colonoscopy otherwise unremarkable? (I just had a screening one--no polyps or inflammation found, so I'm good for five years.)

The thyroid issues can make you feel tired/lethargic by themselves. There is a tendency for people with one autoimmune issue to have others, though, so if there is evidence of autoimmunity to the thyroid (with the antibody markers) that's another reason to get the gluten/celiac testing (there are numerous people with both).

Thanks Glenntaj!

The result of my colonoscopy was unremarkable - no polyps or inflammation. Just a segue, my insurance (or most insurance I know) has this guideline on how often to take colonoscopy - if you are at risk, you will be allowed to have another colonoscopy for 3 years or 5 years, depending on your age and other medical conditions. Otherwise, 10 years is the next follow-up.

The tests I will get for Celiac are : IGg/IGa Gliadin Antibodies and Tissue Transglutaminase Antibodies. Are these the tests that I should get for an accurate diagnosis of Celiac/Gluten Intolerant?

I already had taken the antibodies for my thyroid and it was normal. Thank God.

Mary

Those serological tests--
 

--are the standard celiac/gluten panel--but they should also measure total IgA, as low total IgA--a common finding--can skew the results of the IgA gliadin and IgA tranglutaminase tests.

There are people who have negative serology who do show villious atrophy on biopsy (some correspondents who are represented in the Gluten File say this may happen into up to 20% of biopsy-proven celiacs). Generally, the anit-transglutaminase assay is more closely correlated with extent of intestinal damage, but there are exceptions.

A number of pharmaceutical companies have been working on "next generation" celiac testing that would be more specific, but none have reached the market yet.

Thanks Glenntaj.
Do you mean the total IGa should be a test in addition to IGg/IGA Gliadin and transglutaminase? Should the doctor add this on the request or is it something that I could ask from the lab?

I am going to have my test tomorrow morning.

Thanks again.

Mary

Yes--
 

--see if you can get the doctor to add that total IgA test--if it comes out low, results from the other tests may be skewed.

Thanks. I will try to get the total IGa test from my primary care physician when i get the results of the IGa/IGg Gliadin and Transglutaminase.

it doesn't work that way, it has to have been ordered. See if you can get the doc to call the lab and have them add that test, if they still have your blood speciman

I had the test last Friday. The lab said the result will be sent to my doctor this coming Monday or Tuesday.

Can I take the total IGa test separately when I get another request from the doctor?

A total IgA can be done--
 

--from any blood sample, but has to be specifically listed--it's not a "standard" test.

You can certainly tell the doctor why you think it should be done--and point him/her to the Gluten File if you need to for papers that explain why a low total IgA may skew the results of other celiac blood tests.

Hi. I got my IGg and IGa Gliadin and Transglutaminase results today. The results are as follows:

Deaminated Gliadin Abs, IgA : 2 (Negative is from 0 - 19)
Deaminated Gliadin Abs, IgA : 3 (Negative is from 0 - 19)

Transglutaminase IGa : <2 (Negative is from 0 - 3)
Transglutaminase IGg : <2 (Negative is from 0 - 5)

There is a paragraph below the Transglutaminase result that reads:

Tissue Transglutaminase has been identified as the endomysial antigen. Studies have demonstrated that endomysial IgA antibodies have over 99% specificity for gluten sensitive enteropathy.

I was unable to get the total IGa test. With my results, do you think it is still necessary to get the total IgA test, or are my numbers conclusive of being not celiac/gluten intolerant?

I read just now on the Gluten File link that the Gliadin test should not be substituted with deaminated gliadin when you have neurological symptoms. But, the laboratory clinic where I (always) go, used deaminated gliadin (without informing me).

In the protocol of medically acceptable diagnostic tests and results, is the "deaminated gliadin" reliable enough to be conclusive for patients with neurological symptoms?

Thank you for your inputs.

Mary

There's a lot of controversy--
 

--regarding that question.

Dr. Hadijvassiliou's work seems to suggest that many people with neurological presentations of gluten problems, with or without concommitant gastrointestinal symptoms, may only show up with a isolated abnormal anti-gliadin IgG and/or anti-gliadin IgA; this may be due to the fact that the anti-transglutaminse IgA is the test for which abnormal figures are most associated with villous atrophy (you probably ran across this in the Gluten File) and such people do not typically have large-scale atrophy (or at least, not yet). There's also the suspicion that people who present that way may have a different genetic profile--HLA-DQ1, as opposed to the HLA-DQ2/DQ8 types more closely associated with celiac.

But then again, as many as 20% of people with biopsy-proven celiac show up negative on the anti-IgA tranglutaminase.

The tests results you've listed certainly don't constitute a definite bell-ringing diagnosis. But there's enough variability in the tests to say it's not an absolute negative, either. You could always try a gluten-free trial just to see if things get better symptomatically--no one needs to give anyone permission for that.

Well, I think, getting a gluten-free diet should be the way to go... This will be hard for me. I dont know where to start, but getting a relief from my PN symptoms will be the best motivation for me. Oh God, I am willing to try everything just to give me relief from this pain.

Thank you.

Oatmeal
 

I am reading about gluten free foods. I encountered articles about oatmeal to be confusing. Is it safe to eat or not?

Thank you.

Ah.
 

Another area of controversy. (Although it's good to be posting about these areas for those who are fairly new to all this.)

Oats do not contain the same type of gluten protein that celiacs react to. The structure of the oat protein molecules is similar to that of whet, rye, and barley, but different in a few respects.

The problem over the years has come from contamination of oats with those other proteins. Often, oats are grown in fields near (or even within) fields in which these gluten-containing grains are grown, and it is a simple matter for there to cross-contamination by wind, by pollinators, but perhaps most importantly, during the processing of the grain into food.

The key, I believe, is to consume oats harvested/milled from a facility of machine line DEDICATED to oats--not one that is also used to process on of the other grains. Any small amount of contamination risks a reaction in the sensitive. It used to be very hard to find oats processed in such a manner, but it has gotten easier with the interest in gluten-free eating, and oat products will usually say whether they have been created using a "dedicated" oat processing facility. (If the product doesn't indicate that, be suspicious.)

Hi. I am starting on gluten free diet . I have read that spices and dairy products are safe but I read some of them should be specifically labelled as gluten free. I am particular on the basic spices like ground pepper, cinnamon, paprika. For dairy, I am interested on no fat milk, no fat yogurt and no fat cheese.

I bought yogurt yesterday and it was really labelled gluten free. But I didn't see gluten free for milk and cheese as well as the spices.

I will appreciate your inputs.
Thanks.

Calcium Tablets
 

Hi. I am taking Caltrate 600+D Plus Minerals in tablet form (purple label). I called the customer service and asked if this supplement is gluten free.

I was informed they are not using any ingredients with gluten, however they cannot vouch the safety of the raw materials they ordered from different sources due to possible contamination. So, they cannot 100% claim that this product is gluten-free.

Is/are there anybody in the forum who is/are using Caltrate 600+D Plus Minerals who have had a reaction?

Will appreciate input.
Thank you.

Mary

Hi Mrs.D,

The gastro might request for an endoscopy due to some acid/burning problems...is endoscopy the same procedure used to biopsy the villi? Either gluten intolerant or celiac, will this be detected in the biopsy?

If its the same procedure, I was hoping to request from the gastro a biopsy to rule out or rule in gluten or celiac. There are just so many things happening in my body now that I would want to narrow down causes.

Thank you for your reply:hug:

I believe the sampling is from the villi in the intestine.

From reading the gluten posts for years, I think even some
biopsies can be negative and people still report the GF diet helps anyway. This is because the intestine is not all inflamed equally and patches may be missed.

You'll have to ask the doctor, if he plans on going past the stomach into the small intestine. The scope will show if
the stomach has inflammation or ulcers, etc.

Glenn knows more about the testing than I do.

Thank you Mrs.D. I hope Glenn will provide me with his knowledge.

If the intestine is not equally inflamed, do you think it will be advantageous to do the biopsy?

Usually they only do a biopsy if some of the blood work is iffy, or not strong.

Did you have all the blood tests already?

Gluten intolerance is less likely to be positive for GI biopsy.
Celiac is more severe, and there is usually a positive biopsy with them, but not 100% of the time as I have read.

I had tests for Gliadin IgG/IgA and IgA/IgG Tranglutaminase and all negative. I dont know if my results maybe considered as iffy. The only questionable about my result is the laboratory used the "deamidated gliadin". The Gluten File says:

A newer test, anti-deamidated gliadin, has been developed over the last several years and some labs are beginning to automatically substitute it instead of the original antigliadin antibody tests. The newer test is more specific to "celiac disease / villous atrophy", which is not helpful when looking for gluten sensitivity manifesting in non-gut ways (like neurological disease or other autoimmune disease), or when there are gut symptoms that have not yet caused villous atrophy. BE SURE your doctor orders the original antigliadin tests. DOUBLE CHECK that the right tests are ordered, and DOUBLE CHECK that the right tests were run. You want anti-gliadin IgA and anti-gliadin IgG, over anti-deamidated gliadin.... or all of them!

The reason why I had to ask about it again is because I read that Celiac/Gluten Intolerance may cause Sjorgren's. With all the new symptoms I am experiencing: dry eyes, mouth, throat and nostrils and more specially the fibronodules in my lungs - I was hoping to rule this condition out of my way...

Thank you:hug:

Keep in mind that an endoscopy is an invasive procedure.

If you don't have a strong indication for it, I'd just do the GF diet and see what happens over the next few months.

It is your choice after all.. but if you search endoscopy risks, you'll see what I mean.

Thank you MrsD. I don't want invasive procedures. Its just I am becoming too desperate.

A normal endoscopy--
 

--should be able at least not only to look at what is going on in the stomach, but in the duodenum, which does contain villi and from which samples can be taken.

Sometimes, evidence of frank celiac may be found there. But, as noted, the damage to villi may be patchy, and may occur farther down the small intestine. And a standard endoscopy may not get that far down--for one thing, a different, smaller scope may need to be used.

There were a spate of recent articles referencing a study concluding underdiagnosis of celiac due to lack of sufficient villous samples taken on "standard" small intestine biopsies--here's one link to it (and it gives the original study reference):

http://www.stonehearthnewsletters.co...nored/updates/

As for colonoscopy...is there any way the scope can be um, DISINFECTED? Can traces of someone else's bacteria - even some harmful? - be deposited?

My dd-adult (now 27) was shown to have intolerance to gluten after blood work only-about four years ago. Doc left it up to her if she wanted further testing. She opted for a change in diet and has NOT looked back. She went YEARS on Synthroid (T4) replacement ONLY - with NO testing of diet. How long she had this "intolerance or sensitivity" is anyone's guess. Her weight ballooned from 160 to 210 in a matter of weeks, along with increase of BP and extreme fatigue. Nothing was done until she finished school and returned home, for I demanded the gluten blood work.

We also suspected Sjogren's, which I have read that treatment focuses on relieving symptoms, which often subside with time. (mayo clinic dot com site) Which do we focus on? Her Hashimoto's? Hypothyroidsim? PCOS? The extreme fatigue *EBV+? The newer complaints of achy swollen joints? The extreme and often debilitating constipation issue that is NEVER addressed by the endos/docs? Possible affects from the first trial/inject of GARDASIL her primary care physician demanded? (She became so ill after Round 1. Being newly separated from dh, her doc said it was imperative she get that vaccine. Then the spiral down with her health. I am suspecting EXTREME CANDIDA in gut, now) Diet has helped TREMENDOUSLY.

We don't miss gluten. Or corn. Or soy. She has reintroduced some items found upsetting, and she is doing much better while taking probiotics, fermented foods, beta glucans...in fact, I feel better too! :) Embarking on liposomal vit c to see if there is any difference.

There are alternatives to moldy fungi filled grains. I like throwing already made pasta in the water - since she cannot have CORN (and rice which is in most gf pastas I wonder if it can become problematic for those on gf diet) - there is Andrean Dream pastas that have NO CORN, NO RICE and is wonderful. Quinoa. Kaniwa. Tapioca. All very good!!!!

We won't even go NEAR peanuts! No intolerance per se, just they are found to be so moldy and those molds are carcinogenic. Why chance it? So many OTHER choices. ;0

Proper diet can help in so many ways. If gluten is being eliminated in diet take a look at supplements and personal care products as well. Get familiar with the terms, you will find these items everywhere *flour is used as an agent to help liquids flow!

We don't miss corn. Won't TOUCH canola - whatever THAT is ;) No soy here unless fermented. Raw dairy in limited amounts. NO SUGAR. NO PROCESSED. NO RESTAURANTS unless the kitchen is dedicated to gf. No chemicals used on yard, in home - NO CANDLES OR AIR "fragrences." Clean filtered - NO MERCURY, CHLORINE, FLUORIDE - water only. She does supplement Iodine, selenium, a little zinc, magnesium citrate, to name a couple. We try to get mins/vitamins from our foods as much as possible.

Good health wished to you Idiopathic PN :)

Thank you Glenn for your reply.

Do you think that it would be wise if i request another test, not using the "deaminated", just before considering the biopsy?

I am wondering if one is celiac, can she/he still absorb nutrients? I ask this because i am taking Vit B12 (just an example) and my blood shows the max number after 3 months, which means that I absorb VitB12. I am not sure if my thinking makes sense, just thinking aloud. :winky:

I have a strong suspicion that I have Sjorgren's, though, all my tests are negative. I have all the dryness of eyes, mouth, throat and nostrils. AND I have fibronodules in my lungs. I doubt that even my neurological symptoms may also be caused by the Sjorgren's.

When you use the B12 5mg daily on an empty stomach as we do here, you bypass the need for intrinsic factor. It is passively absorbed therefore.

It seems that the gluten intolerant people may have damage to the system that utilizes intrinsic factor for transport of cobalamin from animal food source protein.

Not all people with gluten intolerance get GI inflammation.
What happens is that the leaky gut (enlarged Zonulin channels),
allow the gluten peptides to enter the blood stream where they don't belong, and they arouse antibodies against nerve tissue.
From reading the gluten sites and forums, there seem to be people who don't have the diarrhea, gas, bloating, and the converse constipation all equally.

The Celiacs with the genetic markers, seem to be intolerant of many foods and have severe GI symptoms, however. They have the most inflammation in the intestine, and hence nutrient absorption there can be reduced. This includes many vitamins
and minerals, not just B12.

If left untreated celiac disease can lead to some serious problems: Anxiety and depression... So it could be complications of untreated celiac.