Need Help Making Sense Of This...

[tgdhyer]

An Enterolab test said I have 2 genes that can lead to celiac, but that I do not have the celiac genes. My stool for IgA anti-gliadin as well as transglutaminase and soy were also positive. It was recommended that I stay away from gluten.

A Kimball test said I do not have any celiac genes and there is no reason to believe I have celiac.

My blood test for celiac was negative as well, but I was also gluten free for several months prior. I had the correct test done on me.

A food allergy test said I was allergic to all of the gluten containing grains as well as many other things, but not to gluten. (I was also gluten free for several months when I had this done.)

I read somewhere (can't remember where) that there may be link between gluten intolerance and lyme disease which I also have.

I know that when I do not eat gluten I feel better and a lot of my symptoms seem like they might be celiac. I also have a history of celiac in my family.

Is it possible that maybe the lyme is making me intolerant to gluten? Should I remain gluten free and if you have gluten intolerance and not celiac is it as dangerous-- meaning would I be able to have gluten once in awhile without long-term ill effects? Thanks.

[sugarsue]

Hi! I'm sorry that I do not know the answers to your questions. But, I also have a wheat allergy, not an intolerance. I feel completely better when I do not eat wheat. Because of this, and because of my daughters needing to be gluten free, I live a gluten free lifestyle happily. I don't miss the wheat at all. It sounds to me as though you have many indicators that you should stay away from gluten to feel good.

As far as whether it will cause long term ill effects, I struggle with this regarding my daughter (6) since she is undiagnosed celiac. She is so sensitive, I would never knowingly give her gluten. But will the mistakes cause her trouble since she MAY have celiec......

I hope you find the answers you are looking for. I'm sorry I don't have them but maybe this will be somehow helpful!

[RiceGuy]

I agree that the evidence suggests you should remain gluten-free regardless of whether you actually have Celiac, gluten intolerance, or a wheat allergy. If you knew for sure that there wouldn't be damage, would you intensionally consume it, and put up with the discomfort?

Since Celiac apparently runs in your family, I wonder if you might develop it if you were to include gluten in your diet. Seems to me you're in a good position right now. Many of us wish we had that chance. I'd say, do yourself a huge favor, and remain gluten-free. Hopefully you'll never develop Celiac. Once you get it, there is no turning back. Most people only find out afterwards.

On the other hand, perhaps the tests which came out negative did so because you've been gluten-free.

[ravenwoodglass]

If you are gluten free your blood test will come out negative whether you are celiac or not.

In addition there are now 7 more genes that have been found that are associated with celiac. Gene knowledge is in it's infancy and in the case of not having DQ2 or DQ8 there are celiacs who are firmly diagnosed who don't have either.

[rinne]

Hi.

I have Lyme disease too and it is my feeling that it triggered the Celiac. I also have a family with Celiac. My sister and brother were both diagnosed through endoscopy and another brother and I self diagnosed through symptoms and the obvious family connection, plus another sister who is still in denial but dabbles in the gluten free world and not to leave out Mom who has had digestive issues for 40 years or more.

Regardless of what the tests say or don't say I think we have to trust ourselves to know what is best for us. I know that I got into trouble because I ignored that.

If you have gone the ABX route for the Lyme your digestion will have been compromised by that also. I didn't.

It is important to remember that if it is Celiac then any gluten you consume is doing damage.

I have decided that if I go for one year without any kind of symptoms I may be willing to do a challenge and eat a little gluten to see if I can tolerate it but I don't know if I will bother. This past week I have been perfecting an apple pie recipe with almond flour that is the best apple pie I have ever eaten and the healthier I become the less I crave anything that does me harm. I have also noticed that my body is quite communicative with me about what it likes and doesn't like and foods that I used to crave I no longer crave. I haven't had chocolate in two months and I really don't miss it.

All this to say that life without gluten can be just as tasty as life without it!

[pgrovetom]

An Enterolab test said I have 2 genes that can lead to celiac, but that I do not have the celiac genes. My stool for IgA anti-gliadin as well as transglutaminase and soy were also positive. It was recommended that I stay away from gluten.

A Kimball test said I do not have any celiac genes and there is no reason to believe I have celiac.

My blood test for celiac was negative as well, but I was also gluten free for several months prior. I had the correct test done on me.

A food allergy test said I was allergic to all of the gluten containing grains as well as many other things, but not to gluten. (I was also gluten free for several months when I had this done.)

I read somewhere (can't remember where) that there may be link between gluten intolerance and lyme disease which I also have.

I know that when I do not eat gluten I feel better and a lot of my symptoms seem like they might be celiac. I also have a history of celiac in my family.

Is it possible that maybe the lyme is making me intolerant to gluten? Should I remain gluten free and if you have gluten intolerance and not celiac is it as dangerous-- meaning would I be able to have gluten once in awhile without long-term ill effects? Thanks.

You really need to think about the various tests ( if done correctly) as indicators and not proof.

As someone else mentioned, the gene testing is in its infancy and any particular gene has multiple affects so its at best is a warning sign as is the family history.

Celiac Disease is the term that refers to your intestinal wall being damaged by exposure to Gluten if your body has a sensitivity or allergic reaction to Gluten

The damage impacts your ability to absorb nutrients so irrespective of whether you take supplements or eat a healthy diet or eat only vegetables etc.., your bodies bio-chemistry can come up short on essential nutrients.

Here is a nice diagram showing part of your bodies Metabolic Pathways chart from Aldrich.

Open Original Shared Link

Very few if any one person truly understands all the pathways but you can see very quickly "see" by just looking at the diagram, how complex your body and brain's use of nutrients in the production of all the ingredients for a healthy functioning person really are!

The human body is amazing at adjusting and compensating and/or synthesizing the ingredients trying to compensate for a poor diet. It has limits and some of the required ingredients like the "Essential Amino Acids" must come into the system through diet.

If any limit is hit as your body's Metabolic System tries to function, almost anything can go wrong. The immune, endocrine. neurological etc. systems can begin to malfunction and cause symptoms from Psychiatric ( depression, anxiety etc.) to Allergies, Neurological, pain, headaches, Gastrointestinal etc... Your body needs its diet and not just vitamins.

If your intestines have been damaged by a reaction to Gluten, then the absorption of nutrients you have eaten begins to fail. That in turn eventually causes your Metabolic system to fail or mess up which in turn can cause your immune or any system to fail or behave in odd ways. Then you feel symptoms!

You can take all the tests but they have reliability problems or errors such as taking them after being on a Gluten free diet. When you go Gluten free, your intestines heal and your nutrient absorption begins to work properly and your metabolic system is happy and then the other systems can recover.

It is possible something became permanently damaged but most systems return to normal functioning once the metabolic system is properly fed.

The only sure way to see if your symptoms are due to Gluten sensitivity and Celiac intestine damage and so forth is to go Gluten free for enough time to allow all the systems to restore and eventually so goes the symptoms it caused.

You can have your intestines biopsied to look for damage which is good and direct evidence but even that is subjective and can have false positives and or negatives.

Its pretty difficult for most people to simply switch to a Gluten free diet for a few months as a test, so blood tests, genetic tests, stool tests and the biopsy have been designed to indicate whether the Gluten free diet test is warranted since its subject to patient compliance.

If you have weird undiagnosed symptoms, checking for Celiac or Gluten sensitivity is a smart part of a differential diagnosis. That simply means eliminating the candidate possible causes suspected. Since Celiac can impact nutrient uptake, it can mess up anything and have virtually unlimited symptoms from one person to the next.

A Gluten free diet if done correctly and possibly with GOOD necessary supplements can be very healthy. If you have the desire and can do one for 3-6 months or longer, that is the "Acid test". It must be done correctly and sensible supplements are wise anyway.

If you don't think you have the will power to do the Diet test, then the comprehensive blood tests, stool tests, genetic tests and biopsy can provide enough indicators to convince you that you better try it. If you just skip the tests and go to the diet, you can cut through all the testing ambiguities and see if you respond. If you can't, then take the tests when NOT GLUTEN FREE while the intestine damage is still there. The genetic tests can be done anytime but are also the weakest indicators.

Most of the tests rely on the Gluten presence, intestinal damage and/or nutrient problem to be still happening. Once you go Gluten free, the antibody tests and other secondary indirect tests begin to show you are ok because the immune sysetm response and intestines are healing. The genetic test doesn't care as your Genes have been locked in since conception and derived from your mother and father's blend.

If you go on the diet first, then most of the tests become irrelevant or ineffective because the elimination of Gluten has led to intestinal healing which in turn is leading to Metabolic system happiness and secondary system restoration. As each system heals, a test relying on its having a problem will not be effective. Once the Gluten is gone, your immune system begins shutting down the antibody creation and the standard antibody tests begin to fail. Your intestines heal more quickly than say your endocrine or immune system so the symptoms are likely to take longer to clear up since its a dependency chain. One affects the next and that takes time. For example; if you were depressed because your brain was unable to synthesize neurotransmitters or something else necessary, those symptoms require: No Gluten -> Intestine healing-> neurotransmitter precursors from diet appear in stomach, intestine, blood then brain-> brain is able to create the levels needed of neurotransmitter or other -> you begin feeling less depressed as your brain chemistry returns to normal. That takes some time and is a simplistic example to illustrate only. The real body is more complicated.

So a broad response to the questions about tests are:

Take them while still on your Gluten rich diet and still have symptoms that led you to the testing and still feel lousy.

If they seem to indicate a high likelihood of Celiac than move to the Gluten free diet.

After a few months, repeat the same tests while on your Gluten free diet (as the only change) and compare results. If most tests that indicated a positive become negative after being on the diet and your symptoms go away, you have good proof. Not mathematically unambiguous proof but pretty darn good.

I'm not a doctor so don't take my explanation as anything but one persons input. The logic is the most important part as the body, metabolic system, symptoms, other systems, tests and the whole things is very complex. I have been unable to find a good diagnosis decision tree that has been tested over time specifically for a Celiac differential diagnosis but it would go something similar to what I described but the complexity leads to many possible errors. A decision tree with error detection and /or redundancy would be nice to see.

This is not medical advice but hopefully adds a little knowledge to your quiver that helps in sorting your difficulty out. Most doctors don't have the time or can afford the attention that you see on TVs "House" so adding your own knowledge and attention bridging gaps, can help compensate for doctors having inadequate time to be 99% reliable. The insurance/medical business system simply doesn't allow even the best doctors enough time. Even if you can afford it, its not easy to find doctors with the time freedom and expertise mixtures so adding your help can really make a difference.

hope that is helpful...

Tom