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#1 feedjake92

 
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Posted 26 April 2004 - 03:44 PM

These questions have probably been asked before, but the more I read, the more questions I have. My son has been on a gluten free casein diet for about 5 years and to keep him on it, I eat pretty much what he eats. Although, when I am away from home I occassionally eat things that contain gluten and casein. For example, if he has a baseball game, I make sure to feed him properly before he goes, but rarely take the time for me to eat. Which means I usually get hungry at the game and when he isn't noticing, eat pizza or a hotdog. Also, when we have to eat out I will take a gluten-free homemade bun and order him a McDonald's meal without bread and cheese. Then I just order a meal for myself. We don't eat out often, but in the past 6 months or so I have probably eaten something with gluten once or twice a week. I have also not checked on the shampoo or lotions that I use! I do know they aren't on the acceptable Gluten-free Casein-free list we use for my son. What I am wondering is if I have a problem with gluten, could the little bit that I have been ingesting cause me to have increasing symptoms and now nutritional problems? Why would they get much worse? Also, how much do you need to ingest and for how long for what kind of test to show the problem? I need to understand what I am talking about when I go back to my doctor. This group of doctors has not been very helpful to me with my son as far as his food sensitivities, behavior problems, etc. They seem to not understand any of it so just ignore that he has any problems. I am afraid that is what they will do with me. I am not satisfied with "take vitamins for three months, come back and redo the CBC."

When initially being tested for different things, my son had a urinary peptides test done for both casomorphin and gliadorphin. The gliadorphin was 160.4 (normal being less than 20ng/ml). That was before the Gluten-free Casein-free diet. In January, he had the Celiac Disease AB Profile done with the following results: IgA-negative, IgG-negative, (tTG) IgA-negative, Reticulin IgA Ab-negative, Reticulin IgG Ab- 1:20

He hasn't had his follow-up appointment with the doctor that drew these labs yet so I don't understand the results, but I thought it might help you answer my questions.

Even though I have been doing all this research to help my son, I have never really researched what related problems I might have. I feel so ignorant!

I'm sorry if this is confusing. That seems to be how my brain is working lately. Thanks for your help!
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#2 concernedlady

 
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Posted 27 April 2004 - 09:33 PM

DEAR MOM OF GLUTEN INTOLERANT SON,

HERE ARE SOME RESPONSES TO SOME OF WHAT YOU WROTE:

What I am wondering is if I have a problem with gluten, could the little bit that I have been ingesting cause me to have increasing symptoms and now nutritional problems?

YES. BUT, THERE MAY BE ADDITIONAL PROBLEMS THAT NEED TO BE DIAGNOSED, TOO.
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Why would they get much worse?

I BELIEVE THAT WHEN PEOPLE ARE ALMOST GLUTEN-FREE, AND THEN EAT A LITTLE BIT OF GLUTEN, THEY CAN HAVE WORSE REACTIONS TO THE GLUTEN THAN THEY HAD PREVIOUSLY. BUT, YOU MAY ALSO HAVE ADDITIONAL PROBLEMS THAT STILL NEED TO BE DIAGNOSED, INCLUDING POSSIBLE ADDITIONAL FOOD INTOLERANCES (IN ADDITION TO GLUTEN INTOLERANCE).
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Also, how much do you need to ingest and for how long for what kind of test to show the problem?

THESE ARE GOOD QUESTIONS. OTHERS WILL SHARE IDEAS ABOUT ANSWERS. ONE ANSWER IS TO HAVE A STOOL SAMPLE TEST DONE, BY DR. KENNETH FINE, MD's "ENTERO-LAB", WHERE THE STOOL TESTS LOOK FOR THE PRESENCE OR ABSENCE OF ANTIBODIES TO GLUTEN. SEE DR. FINE'S HELPFUL WEBSITE, AT http://www.finerhealth.com
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I need to understand what I am talking about when I go back to my doctor. This group of doctors has not been very helpful to me with my son as far as his food sensitivities, behavior problems, etc. They seem to not understand any of it so just ignore that he has any problems. I am afraid that is what they will do with me. I am not satisfied with "take vitamins for three months, come back and redo the CBC."

THIS IS A GOOD FORUM HERE, WHERE FOLKS CAN HELP YOU LEARN MORE, SO YOU'LL BE READY TO SPEAK WITH YOUR DOCS. ,BE PREPARED FOR POSSIBLE RESISTANCE: WHEN DOCS DON'T KNOW ABOUT A TOPIC, SOME REBEL AGAINST LEARNING NEW THINGS. BUT, LUCKILY, YOU DON'T NEED A PRESCRIPTION TO GO GLUTEN-FREE!
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When initially being tested for different things, my son had a urinary peptides test done for both casomorphin and gliadorphin. The gliadorphin was 160.4 (normal being less than 20ng/ml). That was before the Gluten-free Casein-free diet. In January, he had the Celiac Disease AB Profile done with the following results: IgA-negative, IgG-negative, (tTG) IgA-negative, Reticulin IgA Ab-negative, Reticulin IgG Ab- 1:20

He hasn't had his follow-up appointment with the doctor that drew these labs yet so I don't understand the results, but I thought it might help you answer my questions.

OTHERS CAN HELP TO INTERPRET THESE TEST RESULTS. IF YOU DON'T GET THESE TESTS FULLY INTERPRETED HERE, YOU CAN TRY ASKING "JCC" AT A SIMILAR NICE FORUM CALLED "GLUTEN INTOLERANCE/CELIAC DISEASE", OVER AT http://www.braintalk.org
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Even though I have been doing all this research to help my son, I have never really researched what related problems I might have. I feel so ignorant!

I'm sorry if this is confusing. That seems to be how my brain is working lately. Thanks for your help!

YOU'RE AT A GOOD FORUM, TO HELP YOU GET ANSWERS, FOR YOURSELF, AS WELL AS FOR YOUR SON! PEOPLE HERE ARE NICE, AND KNOWLEDGABLE, AND WILL GIVE YOU SUPPORT! HANG IN THERE, AND FOLLOW YOUR GOOD "GUT INSTINCTS"! :)

CAROL
http://cantbreathesuspectvcd.com
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#3 lauradawn

 
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Posted 28 April 2004 - 11:33 AM

Well Carol took the words out of my mouth practically.!!!! :rolleyes: If you are mostly gluten free, than it is possible that the little gluten you do have can make your symtoms worse. I am assuming the blood results for IGG IGA TTG.....etc were taken after he has been gluten-free for a while. All of those tests returning as negative, means that he is in the normal range. You must be doing something right in making sure he is not ingesting any gluten. Good JOB!

Another thing to keep in mind, is if he has Celiac, he got it from his family somewhere down the line. It's possible you have it as well.

Keep in mind too, that in order to be tested for celiac accuratley you MUST be consuming gluten! If you are only eating a little gluten once or twice a week, my guess is any testing you do will not be very accurate. It could show negative when you actually have Celiac. Your best bet will probably be to determine how different you feel gluten-free and not. If you have been going months on the same diet as your son, you are basically gluten-free. That may be why your body responds more significantly when you do eat something bad.

Hope this helps
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#4 feedjake92

 
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Posted 28 April 2004 - 12:33 PM

Thank you so much for your replies! This message board is different than ones I have used before, and I was beginning to wonder if I was doing something wrong.

I'm still trying to decide what to do. I am expecting resistance with the doc, because I have "been there, done that" with my son. It was with a lot of research, a lot of frustration, and a lot of tears that I finally found someone to realize my son really had a problem which was not a normal boy or the product of a single mom household! Still the group of doctors I'm going to (our family doctors) don't understand what testing he has had and why and pretty much ignore his diet which is EXTREMELY frustrating when he needs an antibiotic. I have had one even ask me to tell him what to prescribe!!!! I am expecting the doctor to be reluctant in ordering the testing, if for no other reason than he won't know how to interpret the results. That is the reason I was wondering about the amount of gluten I would need to consume for it to show up on the test. I would hate to have the tests come out negative when I do have celiac or gluten intolerance. I guess I am also curious now to see if my son got his problems from me.

Thanks again for your replies! :)
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#5 gf4life

 
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Posted 28 April 2004 - 08:16 PM

Most doctor agree that you would need to be eating gluten the equivalent of three pieces of bread every day for at least 6 weeks. If you have been mostly gluten free for 5 years, it may take more for longer to cause enough damage in your intestines to cause the antibodies to leak into your blood stream. Enterolab might be a better route for you, since it is a more sensitive test and could tell you if you are gluten intolerant, and they also have a gene test that can tell you if you have the genetic predisposition to Celiac Disease or gluten sensitivity. And you would not have to go back on gluten (anymore than you already are) in order to perform the tests. In their questionaire they would ask about your diet and you should mention that you have been most gluten-free for 5 years.

My doctor doesn't believe me either, but she can't dispute that I get better on the gluten-free diet. My kids doctor at least believes me, but is monitoring their progress on the diet, rather than doing the intestinal biopsy. Non of us have the "official" diagnosis yet. I don't think we'll get it until they know more about the whole gluten intolerance spectrum. Not all Celiacs get to the point of total damage and obvious symptoms. Some of us just stay mildly ill for years and have symptoms that are more annoying than life threatening and could be related to something else. It is frustrating to be the patient in these circumstances, but little by little the medical field is learning more about celiac disease.

God bless,
Mariann
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~West Coast-Central California~

Mariann, gluten intolerant and mother of 3 gluten intolerant children




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