"subclinical" Gluten Intolerance

[TCW]

Hello,

I've never posted before and I hope I'm doing it right!

I've had lots of stomach problems for a very long time, and within the last year or so have become anemic. I recently found I was very anemic and had a colonoscopy and endoscopy. My doctor found inflammation that he said was suggestive of crohn's or celiac disease. He tested my blood for celiac, but I tested negative. He said he believes I have subclinical gluten intolerance and should go off of gluten for now with the intention of reintroducing at some point in the future to see what the difference is.

Have you heard of "subclinical gluten intolerance"? Is it the same as celiac? I've just started the diet (about a week) and I am still having some serious stomach discomfort. (Although I'm just learning about things like cross-contamination, etc., so I'm not sure I'm fully gluten-free yet!)

How long do does it usually take to find a difference in symptoms? Also, I've heard intestinal damage actually takes a long time to heal, so do you just have "flare-ups" periodically, even if you are gluten-free?

(BTW: I have low thyroid and tend to get headaches and fibromyalgia-like inflammation.)

Thank you!!! I'm so confused and grateful to have found this group!

[Ursa Major]

I am not sure if there is such a thing as 'subclinical celiac disease'. You may just have celiac disease, which hasn't progressed to the stage of destroyed villi yet (but starts out with inflammation). Which would also explain the negative blood work.

It is very likely that you will have to eliminate dairy and soy as well as gluten in order to feel better. Give it a try, it might make the difference.

Dairy and/or soy could be causing that inflammation as well, possibly not gluten. So, in a few months, you might want to first try eating gluten for a day. If you react, you know you shouldn't have it. After a week (to make sure you don't miss a delayed reaction) you try dairy, and then soy.

Try the gluten-free, dairy and soy free diet for a couple of weeks, and if you are still no better, you may have other intolerances and need to do a real elimination diet.

[Tim-n-VA]

from Open Original Shared Link

Subclinical: Without clinical signs or symptoms; sometimes used to describe the early stage of a disease or condition, before symptoms are detectable by clinical examination or laboratory tests.

Obviously reading a lot into a little information but it sounds like you actually have a good doctor who isn't rejecting options just because they don't yet register on a test.

[TCW]

I am not sure if there is such a thing as 'subclinical celiac disease'. You may just have celiac disease, which hasn't progressed to the stage of destroyed villi yet (but starts out with inflammation). Which would also explain the negative blood work.

It is very likely that you will have to eliminate dairy and soy as well as gluten in order to feel better. Give it a try, it might make the difference.

Dairy and/or soy could be causing that inflammation as well, possibly not gluten. So, in a few months, you might want to first try eating gluten for a day. If you react, you know you shouldn't have it. After a week (to make sure you don't miss a delayed reaction) you try dairy, and then soy.

Try the gluten-free, dairy and soy free diet for a couple of weeks, and if you are still no better, you may have other intolerances and need to do a real elimination diet.

[TCW]

Thank you to those who responded to my questions about "subclinical gluten intolerance". I appreciated the definition of subclinical and had also thought that my doctor was trying to use his head over just lab results.

I had never thought about possibly having to try cutting out things like soy and dairy. I'm already using lactose-free milk, which seems to be working out okay. It makes sense, though, that if I'm having trouble with lactose I should probably check dairy related ingredients on the food lists, huh?

I'm not sure if this is the right place to respond to you guys since this is my first time in a forum like this. Does this seem right?

Thanks again for your thoughts!

[Mango04]

I really seriously think it's possible to have non-celiac gluten-intolerance. There are other health conditions (besides celiac) that might cause a person to react to gluten (Lyme Disease, for example). A person could have leaky gut caused by something other than celiac (which might then make gluten a problem)...a person might experience inflammation in the body as a result of gluten (even if their intestines don't become damaged).

I think there are a lot of possibilities that haven't even been researched thoroughly yet.

Here is one perspective:

GLUTEN SENSITIVITY

The subject of sub-clinical (or hidden) gluten intolerance is frequently the missing link in creating a health promoting diet. This recently discovered health problem is at epidemic proportions in certain populations in the United States and sadly is largely unrecognized. Later, I will discuss lactose intolerance, sucrose intolerance and the subject of food reactions in more detail.

DEFINITION OF SUB-CLINICAL

Sub-clinical means hidden. In other words, there are often no obvious symptoms that would direct a doctor or patient to suspect sub-clinical conditions and it is for this reason that sub-clinical gulten intolerance goes undiagnosed or misdiagnosed.

COMMON MISDIAGNOSIS: CELIAC DISEASE

Sub-clinical gluten intolerance is often confused with a medical condition called celiac disease, celiac sprue or non-tropical sprue, sometimes referred to as gluten enteropathy or gluten intolerance. The reaction to gluten in celiac disease is similar to sub-clinical gluten intolerance, except as to the degree of intensity. Comparing sub-clinical gluten intolerance to celiac disease is like comparing first-degree sunburn from a day at the beach to a third degree burn from a fire victim. They are both burns, but vastly different based on the severity or degree of damage.

Celiac disease is not hidden, or sub-clinical, and as such it is easier to diagnose. A person with celiac disease may have blood in their stool or experience disabling pain when they consume gluten-containing foods. Other symptoms of celiac include steatarhea, which is undigested and unabsorbed fat in the stool, and dermatitis herpetiformis, a skin condition. These obvious symptoms often lead doctors to recognize those with celiac in childhood when grains are first introduced in the diet. Others with celiac disease are not diagnosed until the adult years. In addition to the clinical presentation, celiac disease can be detected by a blood test and confirmed with a biopsy of the small intestine. The clear signs and symptoms of celiac disease make its identification relatively straightforward. Sub-clinical gluten intolerance, however, is difficult to diagnose based on symptoms alone.

INFLAMMATION

In those with sub-clinical gluten intolerance gliadin causes a mucotoxic inflammatory reaction as it comes into contact with the wall of the small intestine. This reaction usually goes unnoticed at first. In fact, this low-grade inflammation may go undetected for years or even decades before it results in the expression of symptoms. The ultimate effect of this hidden wear and tear is the slow destruction of the healthy mucosa, or lining tissue of the small intestine. In some cases there may be symptoms in childhood such as allergies, asthma, reoccurring infections, a constant upset stomach or milk intolerance. Often these symptoms fade in the early adult years only for the problem to reappear when a person is between 30 and 60 years of age.

Inflammation comes from the Latin root inflammare, which translates as "to set on fire" or "to flame within." This "setting on fire" is a literal description of the actual destructive process gluten initiates. Inflammation is your body's way of reacting to injury. When exposed to gliadin, the inflamed small intestine undergoes significant structural changes

MULTIPLE DELAYED FOOD ALLERGIES

Sub-clinical gluten intolerance often leads to the development of multiple delayed food allergies. Leaky gut syndrome and the accompanying premature leaking of food antigens into the bloodstream causes this. In time this overexposure to food antigens causes the immune system to react and foods that would otherwise be tolerated can become allergenic. Although the problem with food allergies is generated by the damage from gluten, removal of gluten and milk dairy from the diet is not always sufficient to remedy this problem. Depending on your circumstances, your doctor may recommend a 4 to 5 day food rotation diet. Many books are available from your local bookstores on food rotation diets.

There are different types of food allergies, some are immediate and some are delayed. Immediate food allergies are usually easy to recognize (for example you eat a strawberry and get a rash.) These don't usually require testing to determine. However, delayed food allergies are hard to identify because the reaction may not appear for hours or days after eating the offending food. For example, eating an allergic food on a Monday night could generate a migraine headache or cause fatigue on Tuesday or Wednesday. Due to this difficulty in identification of delayed food allergies one of two strategies should be followed. The first choice is to follow a four to five day rotation diet. By doing this, even though the exact foods to which you are allergic have not been identified, you will be rotating all your foods, so that any delayed allergic responses will be significantly reduced. This reduces the stress on your hormonal/immune system.

The second option is to pursue additional testing for delayed food allergies. Multiple pathway food allergy testing is designed for this purpose. This testing is done from a blood sample and identifies exactly which foods you are reacting to. You will then know what foods to avoid and what foods are safe.

There's a lot more. Here's the link:

Open Original Shared Link

[AliB]

What I have learned from doing research, is that EVERYONE who eats gluten is, to a greater or lesser degree, Gluten Intolerant.

Man, always trying to 'improve' on what is already the best, has, over the last few centuries, changed the make-up of wheat through hybridisation. Yes, GM was alive and kicking 300 years ago! Whereas wheat in it's original form consisted of 14 chromosomes, it now consists of 42 or even more which has rendered it into a form that is far more difficult for the body to cope with. Not only that but due to it being included in so many foods from meat/protein products even to things like Ice-cream, we have been grossly over-exposed to the stuff causing further difficulties and toxic reactions.

On top of that, we are also grossly over-exposed to sugar which in its own right has set up huge imbalances in the body. It is not surprising we are all so sick.

Whilst Celiac Disease is a manifestation of severe Gluten Intolerance, other illnesses and diseases are also a by-product depending on the vulnerability and genetic weakness of the individual. So whilst my GI will manifest as Celiac, yours may cause Fibromayalgia or Rheumatoid Arthritis, or whatever your particular vulnerability is. Whilst GI in itself may not have degenerated within the intestine to the stage of Celiac (yet), even a low level of damage will affect the way the body absorbs nutrients. Any degree of malabsorption will eventually, over a period of time, impact on the cells and organs within the body causing illness and disease. those cells and organs need a certain amount of nutrition in order to function. If they aren't getting it they will start to break down.

Some may have little or no symptoms of GI until suddenly, out of the blue, they are rendered ill when the body has reached a point where the cells are impacted due to the malabsorption that has quietly been doing its damage. The Medical Profession does not, unless you have the financial means to demand it, do broad spectrum tests for malabsorption issues. You are just diagnosed with Fibromyalgia, or Rheumatoid Arthritis, etc., and without looking for causes, doled out with yet another round of (toxic) drugs and sent on your way.

Gluten Intolerance is a huge problem. As yet, no-one seems to have twigged. Hopefully it will happen and Gluten-free will then become not the exception, but the norm. Until then we just have to make the best we can of the situation. Neither Gluten Intolerance or Celiac Disease is unheard of in Communities that do not ingest Gluten either at all or at least on a regular basis.

If you are reaping the benefit from cutting this potentially 'poisonous' element from your diet, whether you are Celiac or just 'plain' Gluten Intolerant surely is immaterial. Apart from a highly invasive biopsy, which in itself is not always conclusive in any case, unlike other diseases there is no truly definitive test for Celiac. The Doctor has called it Sub-clinical because the tests have not identified it as such and will not do until it has degenerated to the stage where the bowel is no longer functioning. Waiting for the biopsy puts people, and their ravaged bodies through further weeks or months of hell, just so they can have a piece of paper that says they have celiac disease. Are we still living in the Middle Ages? At the end of the day, the ultimate tester is you. If you feel better when you do not eat Gluten, isn't that as definitive as anything?

There always seems to be a 'them' and 'us' thing with illness. Not only am I Celiac, I am also Diabetic. The same happens between Diabetic Type 1's and Type 2's. The problem with this is that it is isolating. If only all the 'diseases' got together and investigated whether there is a link they might be very surprised to find that actually they all have the same link. Gluten. Add sugar into the equation and you have a potential ticking time-bomb.

[Dru]

My doctor found inflammation that he said was suggestive of crohn's or celiac disease. He tested my blood for celiac, but I tested negative. He said he believes I have subclinical gluten intolerance and should go off of gluten for now with the intention of reintroducing at some point in the future to see what the difference is.

I'm so glad you posted this. While I have never heard of sub-clinical gluten intolerance, I had the same test results. I had normal/negative blood tests and when they did the biopsy they found chronic inflammation of the intestinal lining but did not find the blunted villi that would diagnose celiac disease. I have gone gluten-free at the recommendation of my Dr as well and it has almost completely cleared up my problems.

I wanted to let you know that, as suggested in the article that someone posted from Dr. Kalish's website, I also found that I had developed multiple food intolerances and allergies. I actually fit the profile from his article pretty well (milk intolerance as a child, chronic infections, symptoms cleared up in early adulthood, and my current GI problems began right before I turned 31).

In addition to going gluten-free I did an elimination diet to determine my other food intolerances. I found out that I am unable to have dairy, soy, corn, peanuts, egg yolk, or yeast in addition to cutting out gluten. I'm not saying that you need to cut out all of these foods as well, but if you find you are not feeling better after going gluten-free you may want to consider an elimination diet. It seems that many people on this board have found that dairy and soy are problems, so you might just want to start with those if you don't want to do a full blow elimination diet. Mine took about 3 months but it was so worth it since I now feel much better and was able to get rid of all of my GI problems as well as my constant migraines and mild skin rashes.

Whatever you decide to do, good luck with the gluten-free diet, there is definitely a learning curve to it but it is very worth it once you get it sorted out.

Sorry for such a long post, I have a habit of doing that.