back from the naturopath--gluten

Yeah!!! It totally could be gluten intolerance even if it's not full-on celiac. I have a friend in med school who has celiac. You really just have to become a fanatic label-reader. Even things like soy sauce and some salad dressings have gluten in them. Basically, if it has a label, you have to read it, and if it doesn't, it should be directly from the earth (fruits, veggies, etc.) or minimally processed meats. Eggs and cheeses are good too. As far as grains go, you might try some of that gluten-free expensive stuff to see if you like it, but there are plenty of gluten-free things you can make on your own too.

I'd give the new diet at least a few weeks to give it a chance to work. I am crossing my fingers. It will be tough but not as tough as having pain all the time like you have. You go girl!

Sarita, SOY SAUCE?? ok I am so not happy about this as I am a sushi freak. and I live in the northwest, where all we do all day is hang out in coffee shops and eat scones. this will put a cramp in my social life!
and root, I didn't have any other sensitivities, and I didn't have a blood test, it was from a stool and saliva test. it says "gliadin AB, SIgAI...negative for gluten intolerance is under 10, borderline is up to 15 and I am at 61. anyone know anything about this sort of test??
the test also showed a need for probiotics, and I am starting Florastar. I don't remember much about what he said about that, I was too busy mourning my scones.
seriously, I am so thin and eat so little that the idea of stopping the few things I love is pretty depressing.
thanks for your help and keep it comin'!

I have had all the scopes and it didn't show up. I am confused about how all of this works, but I do know some of you have mentioned sensitivities without celiac.

I am hearing you writer and this is where I get confused. I tested negative for celiac a year ago, but this test shows an intolerance to gluten--that is what I need help figuring out.

Yogaprof,

It's difficult for me to answer your question, because I come to this from the perspective of someone who has worked as a medical writer, and so is very wary of claims that haven't been tested. Gluten intolerance has been a very popular diagnosis among naturopaths in recent years, but to the best of my knowledge, no one has ever shown that stool or saliva tests for gluten intolerance are meaningful from a diagnostic standpoint. I don't have a problem with someone giving up gluten-containing grains to see if they feel better without them, but it worries me when I see a practitioner advising someone to give up gluten on the basis of unvalidated tests. So I guess I'm just saying, take the advice with a grain of salt. (The same goes for the advice to take probiotics, since there is no validated test to indicate whether someone will benefit from probiotics.)

Nanners,

Just to clarify, I didn't say that probiotics couldn't be helpful in some people, only that there is no test to determine whether or not they will be helpful in a given individual. Sorry it wasn't clear -- I was responding to a post above by yogaprof indicating that the naturopath had given her a test that indicated that she needed to take probiotics.

What??? You can be gluten-intolerant but not have Celiac's??

I just assume the Celiac's test was a test for gluten intolerance. You learn something new all the time on this forum.

If my daughter suspect she has an issue with wheat, which tests do y'all think should be run to test for gluten intolerance, or wheat protein, or wheat allergy?

THe specfic names of the tests would be helpful.

   

We've had the Celiac test done. Negative.

Interesting about the gluten. Thanks. 

I realize an allergist tests for allergies. Allergies are not always obvious...for instance, it took me years to realize that MSG made my nose feel slightly stuffed up. And so probably caused all them dang sinus infections. Was hoping somebody had had the wheat allergy test done and could tell me what it is named, specifically...Guess we'll just have to ask to be tested for "wheat allergy."

Intolerance is not synonymous with allergy, so am also interested in any tests, beyond those for Celiac's, that might exist to check wheat intolerance. Perhaps they don't exist...

I don't know about the accuracy of blood tests vs. stool/saliva tests. However, when I stopped eating gluten my blood pressure dropped from systolic often at 200 to normal. This was a complete surprise and a long story. I had a terrible problem with canker sores. I heard that you can have celiac disease with NO gi symptoms and at that time I didn't have typical gi symptons, just pain. No doctor was going to test me for celiac disease without symptoms, so I thought. So, I cut out gluten myself. This is not advised because to be formally tested I had to go back to eating gluten. I wasn't expecting it at all, but a few weeks into the diet my blood pressure returned to normal and I had to go off my blood pressure meds (I was on two, searching for a third) . I have read about this in some medical literature. While on this gluten free diet I developed inflammatory arthritis of the knee which was probably the CD.

I decided to be formally tested so went to a gi doctor who was in charge of the local celiac support group. He agreed that you can have celiac with a negative blood test (even the more specific ttGA) and no gi symptoms. He did an EGD with duodenal biopsy which was negative so I am convinced I don't have celiac disease. I went back to eating gluten and developed gi symptoms and by a year later my blood pressure was back up. Whether or not this was some kind of coincidence I have no idea. At this point I saw a doctor who did functional medicine and she ordered the blood tests which showed very high levels of IGG antibody to gluten and related grains, casein, egg protein, corn syrup and ginger with a moderate reaction to soy. I cut out all foods in these groups and not only did my blood presure return to normal again, all joint pain went away and canker sores improved tremendously. I realize that this is not accepted by mainstream medicine but it works for me.

Yogaprof, the way I looked at it, mainstream medicine had not done much for me so I decided to do what I could on my own. I could control what I put in my mouth to see what happened. Cutting out gluten may deprive you psychologically but it is not going to kill you. We eat way too much gluten these days anyway. There are plenty of gluten substitutes, rice, etc that can add calories. Since you don't have celiac, you can eat oats and barley also.

Thought this book might be pertinent to the discussion here. I first read about it here many months ago and just got around to buying it right before Christmas. Have not started reading it yet. I know it claims (as njmom's grandad) that arthritis and such can be blamed on gulten sensitivities.

"Dangerous Grains: Why Gluten Cereal Grains May Be Hazardous to Your Health" by James Braly and Ron Hoggan.

Here's a synopsis:

"Dangerous Grains turns the U.S. Food Guide Pyramid upside down by exposing the myriad health risks posed by gluten grains (wheat, rye, barley, spelt, kamut, and triticale). The authors, leading experts in the field of food allergies, and celiac disease, present compelling evidence that our grain-centered diet is to blame for a host of chronic illnesses. Largely misunderstood and frequently misdiagnosed, these disorders can be prevented and reversed by the useful program outlined in this important new book."

I'll let you know how the book is!

It is my understanding that if you go on a long term gluten free diet, then you might test negative for Celiac's because they are measuring antibodies. And the antibodies might not be measurable in the bloodstream if you have been off gluten.

So rootsmith, maybe that's why you tested negative?

 

I have to admit that my blood pressure is not that great now, although it is nowhere near as bad as it was when I was eating gluten. Like I said, it was not uncommon for me to have a systolic reading up at 200 and that was on two bp medications. After I went off gluten I had really great bp for 1-2 years. Now it is mediocre and I am back on smaller doses of diovan. I don't know the reason for this. It may be that the bp problem is not directly related to gluten. I suspect it is not as simple as eating gluten = high blood pressure. I do know that most joint pain is gone and I had a real problem with that. Also, the mouth ulcers are significantly better than they were before too.

I am also taking zoloft and I suspect that may be affecting my bp and also feeling crummy could make bp worse in some people, as does pain. I hope this makes sense.