Trying to decide whether to do a gluten challenge for definitive diagnosis.

[cmg]

Hi all,

I have been largely, but not completely, gluten free for over a year.  I am trying to decide whether to do a gluten challenge for a definitive diagnosis and want to understand how much wheat I would need to eat each day and for how many weeks to get a valid test result.  If I know I feel better on a gluten free diet, is it worth it to do the gluten challenge?

My gluten-free background is this:

I put my then 4-year-old daughter on a gluten free diet last summer after a long period of serious intestinal issues and a negative celiac screen.  She improved immediately on the gluten free diet.  As a result our entire family has been mostly gluten free since last summer. 

I also was wheat-free for about a year almost 15 years ago after a diagnosis of candidiasis.  In retrospect, it was the healthiest year of my life.

I recently had the genetic screen for celiac and was told (by phone - I don't have a copy of my results in hand yet) that I am in a high risk category and that my genetic results would suggest that I am 10 times more likely than the general population to develop celiac.

My primary reasons for considering the gluten challenge are (1) to understand how careful I need to be, and (2) for my extended family to take this seriously.

I would appreciate any thoughts and information!

[the sensible celiac]

You begin by saying that you have been partially gluten free for a year.  If you do have celiac disease then you are putting yourself at risk of serious or even fatal complications by not being completely gluten free.  People with celiac disease who do not adhere to a 100% GF diet are at greater risk for stomach cancer, pernicious anemia, osteoporosis (including men), other autoimmune diseases, thyroid disorders, and possibly, according to a recent study, are more vulnerable to tuberculosis.  I  suspect there are many more dangers than I have mentioned.

By not knowing if you do have celiac disease you remain in a state of mind that leaves you feeling ambiguous about these potential threats to your health and well being.  This is only logical because a strict gluten free diet is a burden and complete adherence to it is vaguely liking losing an old friend.  Reluctance to accept a diagnosis with celiac disease is not uncommon.  I'm not suggesting these are your motives specifically, just saying that if they are it is easy to relate to that situation.

My suggestion to you is that you would benefit greatly from feeling more certain about whether or not you have this condition.  It might also benefit your family members who would then know whether they are facing an increased likelihood of developing the condition.

You may have what is sometimes called silent celiac disease, that is celiac disease with few or none of the classic symptoms doctors usually expect to find.

Current thinking about the amount of gluten required to trigger the undesirable autoimmune reaction is that only a small amount, maybe 20mg to 200mg per day of gluten ingestion is required.  A single slice of white bread should deliver that dose.  But if your plan is to have a doctor do an endoscopy and biopsy after a gluten challenge you should get her input on how much gluten-bearing food to eat.

I certainly do not envy you being in this state of limbo, and I hope it is resolved for you as soon as possible.

Many grains, wheat especially, set off a chain of events in any person that results in endorphins being released into the blood.  This can help explain why it is so difficult for some people to stay on a strict gluten-free diet.  That mild endorphin-induced sense of satisfaction one gets after eating a sandwich is very pleasant, I know very well that I miss it, but I chose a longer healthier life once I had been formally diagnosed. 

I certainly would not have gone GF when I did if a doctor had not made it very clear to me that it was an absolute medical  necessity.  You should have that clear, unambiguous knowledge, if you can, so you can make the correct decision about your course of action based on the facts.  Your survival could be at stake, your peace of mind is obviously involved.

Sometimes it is easiest to decide what you should do by thinking long and hard about it in a quiet room away from distractions caused by people or high tech gadgets.  Once you do decide give yourself a reason to be glad by sticking with your decision.  We'll be here to listen, share and use as a sounding board for new ideas.

Good luck!

[cmg]

I really was trying to decide whether I should assume, based on genetic testing and symptoms, that I have celiac and go completely gluten free; or whether I should pursue the definitive diagnosis.   It seems that it takes an awfully long time to find out for sure.

I have made an appointment with a GI doc for about 2 weeks from now.

[Sharon]

There's a new book out called Healthier without Wheat that you might find helpful in your considerations.  The author, who has celiac disease, is a naturopath who runs an irritable bowel syndrome center in Seattle.  The book addresses the various forms of testing, their limitations and why it can be difficult to get to a solid diagnosis through the testing routes.  His approach, providing both medical and anecdotal information, is to distinguish between celiac disease which is strictly villous atrophy, and the much wider range of non-celiac forms of gluten intolerance which is just as harmful.   He considers all forms to be serious with avoidance of all gluten as the appropriate treatment. 

I'm not sure the book is on the shelves yet.  But it could be ordered directly from him, Dr. Stephen Wangen on line at www.ibstreatmentcenter.com; or it looks like you can go to www.HealthierWithoutWheat.com.