Elimination diet think I may be Gluten tolerant next steps to get tested? Questions

[xxnonamexx]

47yr male. Three years ago I had a colonoscopy b/c I had stomach issues. Results were fine and haven't had issues until this past mid February I noticed more stomach issues. I went to dr. for physical and everything was fine. I explained my issues and he thought maybe a case of IBS. a few weeks later I felt something was off and decided to eliminate gluten from my diet for 3 weeks and I feel much better. Every morning I have oatmeal and sometimes after eating or a couple hours later need to go to bathroom. I since switched to gluten-free oatmeal and no issues. I used to have whole wheat bread for lunch 5 days a week and no issues. But since eliminated it from my diet. I know in order to get a blood test for gluten sensitivity I need to add gluten back to my diet. I heard I would need to add it back for 6 weeks. MY question is can I just add 1 whole wheat slice a day for 6 weeks before my blood test? Do I need to add more gluten back to my diet for the exam to get proper results. I think I can handle 2 slices of whole wheat bread for 6 weeks without any issues. I have read about gluten and learning about people have been gluten-free for a few years and the mill/villi grew back in their small intestine and they can handle gluten again. I also read your small intestine can heal itself back but it doesn't mean go back to eating gluten. Can you have a minor sensitivity to gluten is that such a thing? Thanks. 

[trents]

Welcome to the forum, @xxnonamexx!

First, some terminology clarification. There is celiac disease and there is NCGS (Non Celiac Gluten Sensitivity). NCGS is also referred to simply as gluten sensitivity. You will also hear the term "gluten intolerance" which is a generic term for either. But in the real world, these terms often get used indiscriminately so there is confusion. With Celiac disease, which is an autoimmune disorder, damage is done to the villous lining of the small bowel when gluten is ingested. Celiac disease and NCGS share many of the same symptoms, especially in the GI category. There is no test for NCGS. Celiac disease must first be ruled out. So, it seems to me that you could have either celiac disease or NCGS and until you undergo a proper gluten challenge and get testing done you will have to live with the ambiguity. 

Guidelines for the "gluten challenge" for those already having embarked on the gluten free diet but wanting to get tested have been revised in the past year or so. The current guidelines call for the daily consumption of at least 10g of gluten (about the amount in 4-6 slices of wheat bread) for at least two weeks in order to give valid test results. Personally, I think two weeks is too short and I would go for four weeks.

About 8% of celiacs cannot tolerate gluten free oatmeal because the oat protein "avenin" is so similar to gluten.

Adult celiacs who practice a consistently free gluten free diet can expect substantial healing of the SB villous lining in 1-3 years. We do hear anecdotal reports of people with healed villous linings being able to return to gluten consumption but they are just that - anecdotal. I do not endorse that approach.

[xxnonamexx]

Thanks for the insights. So 4 weeks I should eat 4 slices of whole wheat bread while maintaining gluten free diet otherwise then schedule blood tests? Would eating the gluten damage my body intestine already if its bad? What do I need to look for in a whole wheat bread to find out if its 10g of gluten. I don't want to take too much. I want to be able to tolerate it as well otherwise this test will be hard.

[trents]

The 10g of gluten daily doesn't have to come only from bread. It can include pasta, cake, wheat-based cereal, etc. I wouldn't obsess over it. The main point is, don't skimp on gluten. Eat normal amounts of wheat products just like someone would who isn't dealing with a gluten disorder.

If you really want to make sure you are getting 10g of gluten daily, go to a health food store and buy a bag of pure gluten. Weigh 10g out on a food scale and mix it in with your beverages. My wife use to buy gluten powder at the health food store and add it to the dough when she was making bread - in the days before I was diagnosed with celiac disease, that is.

[xxnonamexx]

I just don't want to eat too much gluten and get sick for 6 weeks before the test. I would rather eat just enough for the test and not over gluten. I guess 2 slices of whole wheat which I was having and my regular oatmeal may work which was my previous routine and pasta but that's about of gluten daily lol I will have to see not sure about buying our gluten. Is it true after eating gluten it can stay in your body for a long time? If I eliminated gluten for 3 weeks does it mean it's really still in me and I can still have issues? Thanks

[trents]

The reality is, returning to gluten consumption makes some people so ill that they cannot complete the gluten challenge. There is no shame in that. Nonetheless, they must live with the ambiguity of not knowing whether they have celiac disease or NCGS. Another reality is that at the end of the day, both conditions require complete abstinence from gluten and other "cross reactive" foods.

One thing you can do is to get genetically tested to see if you have one or both of  the genes that have been linked to the development of celiac disease. This doesn't require a gluten challenge. However, the gene test cannot be used to diagnose celiac disease since 40% of the general population have one or both of the genes but only 1% of the general population ever develops celiac disease. But it can be used to rule out celiac disease. If you don't have either gene but you are certain that gluten causes distress then you know you have NCGS.

And, to answer your previous question about the gluten challenge causing further damage to the SB villous lining, the answer is "yes" if you have celiac disease. However, a few more weeks of damage on top of months/years of existing damage is not likely to do irreparable harm. 

Edited May 2 by trents

[xxnonamexx]

Is the blood test required before endoscopy? Can it just go to endoscopy to test. Or would you need to be in gluten diet either way. Can you also be gluten sensitive but not sensitive to cross contamination? Thanks

[trents]

Technically speaking, the blood test is not required before the endoscopy/biopsy but you may have a hard time finding a physician willing to do an endoscopy/biopsy without it having been preceded by positive celiac blood antibody test scores. Positive antibody test scores provide the justification for going forward with an invasive, expensive procedure that has some medical risks attached to it, especially since the gluten free diet is the antidote for both celiac disease and NCGS. We sometimes do see endoscopies/biopsies to check for celiac disease without positive biopsies but only when there is obvious failure to thrive for no other apparent reason and the patient has deteriorated to the point where it has become life threatening. We also see it sometimes done incidentally when checking for other GI-related medical problems.

In your case, there is no obvious reason to suspect celiac disease as opposed to NCGS as all your general lab work values are fine. You just have some GI distress associated with gluten. There is no evidence at this point to suggest that you are suffering from malabsorption. NCGS is 10x more common than celiac disease.

Edited May 2 by trents

[trents]

The other thing to understand is that if the blood antibody testing is negative, it is most likely that the endoscopy/biopsy will also be negative. The blood tests are checking for antibodies from the damage caused by celiac inflammation. The biopsy is checking optically for the same damage. If there are no antibodies being produced then there is no damage happening. In either case, a gluten challenge would be necessary.

Edited May 2 by trents

[xxnonamexx]

Thanks so much for the useful information. What do you mean by invasive, expensive procedure that has some medical risks attached to it, what risks? It appears to be like colonoscopy just other end but never had one so curious in case I need one what to expect thanks

[trents]

Wow! I think the answers to your questions seem obvious to me but I'll oblige you.

It's invasive because they are running a scope into an orifice and down through much of your body. Any procedure that invades the body is invasive.

It's expensive because you are paying a trained professional (a doctor) to do it, plus nurses and an anesthesiologist plus you are using expensive equipment. It may not be expensive to you, depending on your insurance plan, but it is expensive as far as the health insurer is concerned.

It involves some risk because you would be put under anesthesia and because there is always the danger of tearing something with the scope on the way down through your esophagus, stomach and into your small bowel.

 

 

[xxnonamexx]

Thanks for the explanation. Do you think a dietician is required? I see people ask about getting one but what now will they help with besides charge you to say start away from gluten.

[trents]

No. That is, unless the dietician themself has a gluten disorder or is managing a close family member who does and therefore is immersed in it daily so as to be up on the nuances of eating gluten free. Otherwise, they just give you very general information which you can get online.

 

Edited May 3 by trents

[xxnonamexx]

Thanks I figured that much as a dietician won't be of much help. Since summer is coming and in 6-8 weeks I will be on vacation with my family I think I will maintain my gluten free diet and not get tested yet as it appears eliminating glute is helping me and for a test to say your right isn't going to hep me much. Does eating gluten vs. cross contamination do you feel any different? Reason I ask is to see if I ate something cross contaminated or that had gluten. I have been using FODMAP to track everything I eat which is an excellent app tracks your feeling, bowel movements etc. I remember I could go out and eat french toast without any issues then somedays eat regular oatmeal and maybe right after go to the bathroom or 2hrs later need to go. Since elimination gluten from oatmeal much better. however in 3 weeks that I eliminated gluten I had 2 instances of diarrhea and unsure if contributed to increase in fiber intake. I am also lactose but have eliminated dairy for yeas as well.

[trents]

Celiacs vary enormously in their sensitivity to cross contamination and I assume the same may be true for those with NCGS. I also wonder if other things going on in our body at any given time can influence whether or not we experience symptoms upon exposure to gluten, especially with reference to minor amounts like you get in cross contamination. We are more sensitive to certain things at some times more than others. But what you describe makes me wonder if you suffer from MCAS (Mast Cell Activation Syndrome)/histamine intolerance. Have you looked into that?

[xxnonamexx]

Never heard of that but what makes you think that? I checked that but only have 1 symptom diarrhea but may be lactose or fiber increase no other symptom of mcas

[trents]

Mostly because of the inconsistency/irregularity of your symptoms with regard to gluten consumption and other dietary factors. Their doesn't seem to be a real pattern.

Histamines are produced by our bodies themselves but they are also found in the foods we eat and the air we breathe (pollen). Certain foods, for example, fermented and aged products, are very high in histamines. Other foods, like bananas and avocados, may be high in histamines but they also may stimulate the body's production of histamines. The body (in the gut) produces a histamine regulating chemical called DAO (Diamine Oxidase). Some people, and this is more common in the celiac community because of damage to the gut lining, don't produce enough DAO to adequately regulate histamine levels in the body. This results in histamine "storms" that produce a variety of symptoms such as headaches, acid reflux and diarrhea. So, I'm just wondering if your symptoms are tied to fluctuating histamine levels that get pushed passed the tipping point at times by various things you may be eating.

Anyway, you might want to research it.

I also wonder if you have IBS.

Edited May 3 by trents