back from the naturopath--gluten

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yogaprof
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   Posted 1/10/2008 6:56 PM (GMT -7)   
after the docs being unable to diagnose me or treat my pain, I finally had tests with a naturopath. last year I had a blood test for cyliac and that came back negative, but this test showed a really high number (normal is 10, mine was 60) for a gluten intolerance. so, I am going to give it a shot after I eat the carrot cake I have sitting here. any tips for me?
I will keep you posted, as always. big hugs, yp
48 y/o woman.  Diagnosed 4/06 after colonscopy, SBFT, CT-scan all showed crohns. 3 months later, after pred and remicade, all tests showed no crohns. In December had adhesions cut through a laparoscopy. Now just taking Glycolax, Ultra Fiber Plus and vicodin as needed.


Sarita
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   Posted 1/10/2008 7:23 PM (GMT -7)   
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!
Co-moderator - IBS Forum


rootsmith
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   Posted 1/10/2008 7:47 PM (GMT -7)   
Was it only gluten that showed a problem? I had blood tests done and reacted significantly to gluten and all related grains, casein, egg white, corn syrup and ginger. I've been on the diet since May 2005 and hardly think about it now. I miss dairy products the most. There are plenty of gluten substitutes that are good but bread is a disappointment. You need gluten to make good bread.
10 years, many tests, 3 gi doctors, Pentasa 1000mg 3x day
diovan, simvastatin and now trying good ol' zoloft


yogaprof
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   Posted 1/10/2008 8:22 PM (GMT -7)   
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'!
48 y/o woman.  Diagnosed 4/06 after colonscopy, SBFT, CT-scan all showed crohns. 3 months later, after pred and remicade, all tests showed no crohns. In December had adhesions cut through a laparoscopy. Now just taking Glycolax, Ultra Fiber Plus and vicodin as needed.


carell
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Date Joined May 2006
Total Posts : 105
   Posted 1/10/2008 8:23 PM (GMT -7)   
Hi YogaProf!  sorry to maybe repeat a question, but you did have an endoscopy right?  A very close family friend suffered for years from Celiac disease but went undiagnosed for the better part of 2 decades.  Why?  her blood test was negative for it.  Acc: to her, the only sure way to diagnose Celiac is through an endoscopy.  She finallly had an endo. and guess what?  It was positive for the disease.  So, she immediately changed her diet and has been living virtually symptom free for the last several years.  We're all thrilled.  (and there is a history in her family for Celiac.  I can't believe it was missed for this long) good luck to you.  I'll be thinking of you.

yogaprof
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   Posted 1/10/2008 8:26 PM (GMT -7)   
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.
48 y/o woman.  Diagnosed 4/06 after colonscopy, SBFT, CT-scan all showed crohns. 3 months later, after pred and remicade, all tests showed no crohns. In December had adhesions cut through a laparoscopy. Now just taking Glycolax, Ultra Fiber Plus and vicodin as needed.


Writer
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Date Joined Aug 2006
Total Posts : 443
   Posted 1/10/2008 8:33 PM (GMT -7)   
Hi, yogaprof,
 
The only valid tests for celiac disease are blood tests. I would strongly suggest that if you think celiac disease is a possibility you have a standard celiac panel (group of blood tests) done by your medical doctor. If any suggest the possibility of celiac, that should be confirmed by endoscopy. Truly, this is something where you want a medically reliable yes or no. If you do have celiac disease, you must follow the diet on a lifelong basis to avoid nasty complications like small bowel cancer. If you don't actually have it, there is no reason to deprive yourself of gluten-containing grains (which tend to be the most nutritious grains). I apologize for speaking so strongly here, but celiac disease is a serious matter and I think it very important to have reliable tests to rule in or out.

yogaprof
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   Posted 1/10/2008 8:45 PM (GMT -7)   
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.
48 y/o woman.  Diagnosed 4/06 after colonscopy, SBFT, CT-scan all showed crohns. 3 months later, after pred and remicade, all tests showed no crohns. In December had adhesions cut through a laparoscopy. Now just taking Glycolax, Ultra Fiber Plus and vicodin as needed.


EMom
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Date Joined Aug 2007
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   Posted 1/10/2008 9:50 PM (GMT -7)   
Whatever you do, yogaprof, I wish you success. I've been following your story closely from lurker position.

My son had the blood panel for celiac done about a year ago and it came back negative. Then he had a biopsy during colonoscopy; also negative. Since then I know I've read somewhere that the blood test is not 100%. I'm sorry that I don't remember where I read that.

Despite these negative findings for my son, I still continue to wonder about a sensitivity for him...

Wish we had a celiac sprue board here...
EMom
Mother to 15 year old boy diagnosed in June, 2007.
Currently taking Asacol, omega 3s, digestive enzymes, probiotics, iron, vit. C, calcium w/D3 and a good multivitamin.
Started The Maker's Diet in early September.


Writer
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Date Joined Aug 2006
Total Posts : 443
   Posted 1/11/2008 7:51 AM (GMT -7)   
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
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Date Joined Apr 2005
Total Posts : 14995
   Posted 1/11/2008 8:16 AM (GMT -7)   
I don't know anything about gluten or Celiac as I luckily do not suffer with that. But I have to respectfully disagree with Writer about the probiotics. I only use Asacol and probiotics to control my Crohns. And since starting the probiotics it has made a huge difference with my Crohns. And many of us Crohnies have problems with a bacterial inbalance in our intestinal tracts that these probiotics have been really helpful with. And the medical community are really looking more into this also. JMHO
Been living with Crohn's Disease for 32 years.  Currently on Asacol, Prilosec 60 mg, Estrace, Prinivil, Diltiazem, Percoset prn for pain and Calcium.  Resections in 2002 and 2005.  Recently diagnosed with Fibromyalgia and doing tests to see if I have Inflammatory Arthritis or AS.


Writer
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Date Joined Aug 2006
Total Posts : 443
   Posted 1/11/2008 8:34 AM (GMT -7)   
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.

yogaprof
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Date Joined Apr 2006
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   Posted 1/11/2008 11:34 AM (GMT -7)   
I understand that these tests may be suspect, but I am curious about people's experiences with cutting out glutin.

njmom
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Date Joined Apr 2006
Total Posts : 1884
   Posted 1/11/2008 11:47 AM (GMT -7)   
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.
 
   

Writer
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Date Joined Aug 2006
Total Posts : 443
   Posted 1/11/2008 1:27 PM (GMT -7)   
Gluten intolerance is often used as a synonym for having celiac disease. It's also used casually by people who consider that they feel better if they don't eat gluten, but do not have proven celiac disease. There is no test for gluten intolerance when the term is used in that casual sense.

If your daughter suspects an issue with wheat, then she should request a celiac panel (group of blood tests) from her primary care doctor or gastroenterologist. If any of those show suspicious results, the diagnosis is confirmed with an upper endoscopy. Wheat allergy is a separate issue, and the presence of an allergy is usually pretty obvious. True food allergies usually cause systemic symptoms such as breathing difficulty, rash, etc., after consumption of the suspect food, and not just mild GI symptoms like a food intolerance. An allergist would test for a wheat allergy.

njmom
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Date Joined Apr 2006
Total Posts : 1884
   Posted 1/11/2008 4:16 PM (GMT -7)   
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...

apalaura
Regular Member


Date Joined Jul 2007
Total Posts : 53
   Posted 1/11/2008 4:29 PM (GMT -7)   
I tested positive (blood test, maybe a prometheus test) for sprue. Endoscopy was neg for celiac. I eat grains without any probs. Go figure...
Dx'd 5/07, azasan, florastor, caltrate, fish oil, cod liver oil, bee propolis


rootsmith
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Date Joined Jan 2004
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   Posted 1/11/2008 5:35 PM (GMT -7)   
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.
10 years, many tests, 3 gi doctors, Pentasa 1000mg 3x day
diovan, simvastatin and now trying good ol' zoloft


njmom
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Date Joined Apr 2006
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   Posted 1/11/2008 6:17 PM (GMT -7)   
My grandad's favorite story seemed to be of how he beat back crippling arthritis by going off wheat and sugar.

EMom
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Date Joined Aug 2007
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   Posted 1/11/2008 6:34 PM (GMT -7)   
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!
EMom
Mother to 15 year old boy diagnosed in June, 2007.
Currently taking Asacol, omega 3s, digestive enzymes, probiotics, iron, vit. C, calcium w/D3 and a good multivitamin.
Started The Maker's Diet in early September.


yogaprof
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Date Joined Apr 2006
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   Posted 1/11/2008 8:42 PM (GMT -7)   
I just ordered that book from the library, emom.
thanks you all for your comments. I love your comments root and hope that I find things as good as you have. I have moderately high PB, so that would be great if it improved as well. I am starting tomorrow and ready to go. I have played along with modern medicine and gotten no where, so as you said, root, why not control what I can!
48 y/o woman.  Diagnosed 4/06 after colonscopy, SBFT, CT-scan all showed crohns. 3 months later, after pred and remicade, all tests showed no crohns. In December had adhesions cut through a laparoscopy. Now just taking Glycolax, Ultra Fiber Plus and vicodin as needed.


njmom
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Date Joined Apr 2006
Total Posts : 1884
   Posted 1/12/2008 3:43 AM (GMT 0)   
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?
 

rootsmith
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Date Joined Jan 2004
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   Posted 1/12/2008 8:45 PM (GMT -7)   
That is correct- that is why it is not advisable to go gluten free before you are tested. The reason I did is because I thought that no doctor would take me seriously without any gi symptoms, other than pain. So I decided to experiment on my own. I left out a detail when describing my situation- what got me onto this experiment was the canker sore problem. People with celiac disease often have problems with canker sores, just like CD patients. And I knew someone who had celiac without gi symptoms (I didn't know that you can also have CD without significant gi symptoms) so I thought maybe my canker sore problem was due to celiac disease.

I went back to eating gluten for 6 weeks before having the blood test for celiac done. (the specific ttGA test, not the more general antigliadin) The gi doc I saw at that time said that would be sufficient time. It was about 2-3 months later when I had the endoscopy and biopsy done and that was negative too. I continued eating gluten for a few months and by that time the gi doc who was going to do a trial of medication for CD changed his mind and told me I had IBS. So, I went back to a gluten free diet. I stayed on that for over a year and had my blood tests for IGG food sensitivities and the IGG antibodies to wheat were still high even after a year. I'm curious what they are now but don't feel like paying for more blood tests (my insurance only paid for the IGE tests which they also did)
10 years, many tests, 3 gi doctors, Pentasa 1000mg 3x day
diovan, simvastatin and now trying good ol' zoloft


rootsmith
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   Posted 1/12/2008 8:55 PM (GMT -7)   
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.
10 years, many tests, 3 gi doctors, Pentasa 1000mg 3x day
diovan, simvastatin and now trying good ol' zoloft


rootsmith
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Date Joined Jan 2004
Total Posts : 598
   Posted 1/12/2008 8:57 PM (GMT -7)   
Yogaprof- another thing, you don't have to go gluten free all at once if that is too much of a shock.  You can start with one meal- i.e. breakfast and work on that. Then go on to another meal etc  
10 years, many tests, 3 gi doctors, Pentasa 1000mg 3x day
diovan, simvastatin and now trying good ol' zoloft

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