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What Should I Do Now?


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#1 Marc49

 
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Posted 25 February 2011 - 12:27 PM

I signed up here not long ago after having a positive for the gene testing from EnteroLab in Texas.

One celiac gene, and one non-celiac showing a predisposition for gluten intolerance.

Long story short,......went into the hospital around the seventh of this month.
Doctor had many tests done on me, and a colonoscopy/endoscopy was one of them.
BTW, the hospitalization had nothing to do with my GI issues, he just took care of everything at once.

Finally got the biopsy results back a few days ago. GI doc says I have no signs of active celiac disease, and that I should return to a 100% normal diet.
I had cut out some gluten but certainly not all,.......the doc knew this BTW.

I guess what I am asking is what path does one in my position take? Obviously I have the genes, but a GI doc is telling me it is not active, and may never become active. He also said if I went 100% gluten free that I was asking for a reaction down the road for sure.

His suggestion was to avoid a high gluten diet, but to not quit totally.
Does anyone have suggestions for me, as I would like to confirm/deny this once and for all and go about a normal life.

BTW,......most of the gluten free products I have been using are fine short of the bread. They ALL stink IMHO!!!!!!!!
Fortunately I am not a big bread eater, but if I need to stay on this I will need to learn to bake something myself.
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#2 ravenwoodglass

 
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Posted 25 February 2011 - 01:01 PM

What led you to think you might be celiac to begin with? I am assuming you must have had symptoms or you wouldn't have done any testing. If you were gluten free or gluten light then of course your tests would be negative. Even on a full gluten diet some of us have false negative tests. I don't agree with the doctor that if you are gluten free that insures you will react to gluten down the road. There are a folks who have gone gluten free for loved ones and they don't get sick when they eat gluten unless they are having a problem with it to begin with. If I were you I would stick with the diet if it relieved the symptoms that caused you to suspect celiac before you did the enterolab testing.
  • 2
Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#3 Marc49

 
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Posted 25 February 2011 - 01:26 PM

What led you to think you might be celiac to begin with? I am assuming you must have had symptoms or you wouldn't have done any testing. If you were gluten free or gluten light then of course your tests would be negative. Even on a full gluten diet some of us have false negative tests. I don't agree with the doctor that if you are gluten free that insures you will react to gluten down the road. There are a folks who have gone gluten free for loved ones and they don't get sick when they eat gluten unless they are having a problem with it to begin with. If I were you I would stick with the diet if it relieved the symptoms that caused you to suspect celiac before you did the enterolab testing.

I had been losing weight without trying,.....gas,bloating,abdominal cramps, and diarrhea that came and went. A new doctor I went to was the one that ordered the test. He is a 'functional medicine' doctor BTW.

My GI doc said I had IBS and GERD,.......irritable bowel syndrome, not the inflammatory type. This was about 5 years ago.
I have been on Nexium on and off since then.

My change in gluten intake was minimal since I don't eat a lot of bread. Main change was in gluten-free pastas. GI doc said it would still show up as a problem.

In all honesty the only difference I can note at this point is I have far less loose stools. I still cramp and get gas/bloating although it MIGHT be slightly less since I have cut back on gluten.
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#4 ravenwoodglass

 
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Posted 25 February 2011 - 02:11 PM

I had been losing weight without trying,.....gas,bloating,abdominal cramps, and diarrhea that came and went. A new doctor I went to was the one that ordered the test. He is a 'functional medicine' doctor BTW.

My GI doc said I had IBS and GERD,.......irritable bowel syndrome, not the inflammatory type. This was about 5 years ago.
I have been on Nexium on and off since then.

My change in gluten intake was minimal since I don't eat a lot of bread. Main change was in gluten-free pastas. GI doc said it would still show up as a problem.

In all honesty the only difference I can note at this point is I have far less loose stools. I still cramp and get gas/bloating although it MIGHT be slightly less since I have cut back on gluten.


Celiac and gluten intolerance are autoimmune disorders. Your body makes antibodies to gluten and even a very small amount of gluten will keep those antibodies active. To really get benefit from the diet you can't just cut back on gluten you have to eliminate it completely. That means avoiding wheat, rye, barley and oats and taking care to prevent cross contamination, like not using a toaster that has been used for gluten breads to toast your gluten-free bread or using a strainer for gluten-free pasta that has been used for wheat pasta.
If you go to the home page here you can find lists of what is allowed and what to avoid.
Only by eliminating gluten totally can you really heal and stop the antibody reaction.
  • 0
Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#5 Marc49

 
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Posted 26 February 2011 - 09:42 AM

Thanks for the info.
I guess what I am getting at is even though I carry the genes, my GI doc says I have no signs of anything being active in me. My colonoscopy was totally clean with no polyps, and the biopsy from the endoscopy was negative. I am aware that the lower intestine is not involved BTW.

Wondering if I should go back to a 100% normal diet for a few months and then do whatever blood tests are available?
I guess there are the same false positives, and negatives in those tests as there are in the endoscopy biopsies though.

From what I have done so far I see that being gluten free is not that hard, but obviously I don't want to do it if it is not necessary. For one thing the gluten-free stuff is a lot more expensive, and as I have said several times, the breads stink,......at least in my opinion. Everything else I can handle just fine.

I guess my other option is to simply do it 100% for a few months and see what happens.

As with most medical testing, nothing is a sure thing it seems.
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#6 shopgirl

 
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Posted 26 February 2011 - 09:53 AM

False positives are extremely rare. Like astronomically rare. And the Celiac tests aren't going to tell you if you have non-Celiac gluten intolerance.

As far as gluten-free "stuff" being expensive. It doesn't need to be. If you eat naturally gluten-free foods: meat, poultry, fish, fruits, vegetables, nuts; you're not paying more. I spend less on food now than I did pre-diagnosis because I'm not eating processed foods. The gluten-free foods are not a requirement on this diet.

As Raven said, the best way to determine whether or not you have a problem with gluten is to just cut it out. Yes, it's inconvenient but it's worth it if your symptoms continue to be an issue. Unfortunately, there are just some things doctors and tests and procedures can't tell us and we have to find them out on our own.
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"My experience has been that there is, surprisingly, always hope." - Eleven

Positive blood test & endoscopy / Gluten-free 10-07-10 / Dairy-free / Soy-free

#7 Marc49

 
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Posted 26 February 2011 - 10:49 AM

False positives are extremely rare. Like astronomically rare. And the Celiac tests aren't going to tell you if you have non-Celiac gluten intolerance.

As far as gluten-free "stuff" being expensive. It doesn't need to be. If you eat naturally gluten-free foods: meat, poultry, fish, fruits, vegetables, nuts; you're not paying more. I spend less on food now than I did pre-diagnosis because I'm not eating processed foods. The gluten-free foods are not a requirement on this diet.

As Raven said, the best way to determine whether or not you have a problem with gluten is to just cut it out. Yes, it's inconvenient but it's worth it if your symptoms continue to be an issue. Unfortunately, there are just some things doctors and tests and procedures can't tell us and we have to find them out on our own.

Yes, you are correct in terms of whole foods, and I eat a lot of them.
I am talking about the pastas, crackers, and convenience type foods that I DO use on occasion.

I guess I need to learn more of what I speak of as I don't even know what type of test the GI guy did with the endoscopy biopsy. Are they looking for Celiac alone, or damage to the villi in the small intestine? I would ASSUME that damage would show whether it was from Celiac disease or simple gluten intolerance.

All I really know at this point is the results of the gene test, and they are supposed to be very accurate.

Also, I think what my doc was trying to tell me was that if I went 100% gluten free when I don't need to, that I may 'hypersensitize' my body to gluten and get a reaction if I changed my mind later. A little of that actually makes sense to me as I tend to believe one of the reasons we have so many children in this country with allergy issues is due to lack of exposure to virtually anything. Most kids don't play outside much anymore and get exposed to what even someone my age did.

It is all very confusing needless to say.
What blood tests are most reliable? That is all I have not had done at this point.

Thanks to all!
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#8 shopgirl

 
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Posted 26 February 2011 - 11:05 AM

If you don't have a problem with gluten, going gluten-free won't sensitize you to it. If you do have a problem, you shouldn't be eating it anyway.

As far as the endoscopy, the doctor needs to take at least 6 biopsies from different locations (damage can be patchy) and then the samples are looked at under a microscope. You're correct in that he's looking for blunted or flattened villi which would indicate Celiac. But non-Celiac gluten intolerance wouldn't necessarily show villi damage. You could have negative blood tests and negative biopsies and still be gluten intolerant. That's why so many of us around here push people to try the diet anyway.

I can't help you with the blood testing but someone else will answer that question. The only issue with gene testing is that, while it's accurate in its results, just because you have the gene doesn't mean you have Celiac and vice versa: it's possible to have Celiac without the gene. And that says nothing about non-Celiac gluten intolerances.

There are some inexpensive gluten-free pastas. I've eaten Heartland Pasta from Walmart with no issue it's $2 a package. I can't help you with the crackers. But Chex has several kinds of gluten-free cereal that are inexpensive and good $2-$3 a box. And Planters nuts are packaged by Kraft who are very careful about labeling their products. Peanuts, cashews, almonds all make a good, convenient snack. I carry a little container of cashews with me everywhere in case I get stuck somewhere without easy access to safe foods. Plain popcorn is another option. There are definitely cheaper alternatives to some of the gluten-free specialty products that can be just as convenient. I know: I'm a girl on a budget who balked at $6 boxes of cereal and crackers.

I hope this helps some. It's frustrating and confusing, I know. I went through the process in September and October last year. It will get easier.
  • 0
"My experience has been that there is, surprisingly, always hope." - Eleven

Positive blood test & endoscopy / Gluten-free 10-07-10 / Dairy-free / Soy-free

#9 Marc49

 
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Posted 26 February 2011 - 11:30 AM

Shopgirl,.....thanks much for your time.
What you say makes a lot of sense, and being as I have already eliminated a large portion of gluten from my diet I think I will simply finish it and go 100% for 2 to 3 months.

Being as I seemingly do not have 'villi' damage, I would assume I should see a noticeable difference within that timeframe?
Actually I SEEM to already have noticed a slight difference as I stated at the start of this thread,......maybe that should be an indicator to me.

I think I am putting too much faith into the results from the GI doc which could very easily be a false negative, or as you said he may not have taken enough samples or in the right spots.

I don't do popcorn due to the fact that my mother had part of her sigmoid colon removed last year as a result of Diverticulosis that turned into Diverticulitis. Her GI surgeon told us that 90% of this issue is caused by folks that eat a lot of popcorn, and nuts,.......not from the small seeds in fruit and veggies.

She used to be a big popcorn eater, and to a lesser degree nuts as well. Not trying to make you nervous BTW!
I had no signs of this in my colonoscopy and I want to keep it that way as I seem to follow my mother a lot in terms of health issues.

I guess I will buy a bread machine, as I just can't tolerate the gluten-free bread that is available around here. I have tried 4 different brands and they all are horrible in my opinion. I have found some bagels and english muffins that I consider edible, and that is what I will use for burgers I guess unless I can find a good recipe for that as well.

Thanks much once again.
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#10 mushroom

 
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Posted 26 February 2011 - 11:54 AM

Your thread is titled "What should I do now?" and I agree with the others, that now you need to try the diet very strictly. It should answer the question of whether or not you tolerate gluten. Keep in mind that you may also have a problem with lactose and should avoid that to start with too and buy one of those 'expensive' almond, hemp or rice milks (but not Rice Dream which is gluten contaminated). :)
  • 1
Neroli


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

------------

Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

Celiac.com - Celiac Disease Board Moderator

#11 Marc49

 
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Posted 26 February 2011 - 12:11 PM

Your thread is titled "What should I do now?" and I agree with the others, that now you need to try the diet very strictly. It should answer the question of whether or not you tolerate gluten. Keep in mind that you may also have a problem with lactose and should avoid that to start with too and buy one of those 'expensive' almond, hemp or rice milks (but not Rice Dream which is gluten contaminated). :)

I have already had some of the almond milk products,.....I think they are good myself.

I really don't drink milk much at all, nor eat cold cereal per se. My weakness in that area is cheese

I just read all of the things you have to avoid in your sig line,.......wow!
I'm sorry you have all of those issues.

Funny thing is I am not like most Americans in this day and age. I largely eat healthy,....not overweight,......lipids are great,......I eat mostly what I call whole foods. I replaced beef with grass fed bison over a year ago and now I can't stand the taste of regular beef.

I am one of those strange folks that eats to live, not lives to eat. If I need to do this I will be able to deal with it I am sure. Only new thing will be baking bread myself,........some of my friends might wonder about me! LOL
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#12 ravenwoodglass

 
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Posted 26 February 2011 - 02:23 PM

Only new thing will be baking bread myself,........some of my friends might wonder about me! LOL


Or your kitchen could become everyones favorite place to be.
  • 1
Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#13 GFinDC

 
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Posted 26 February 2011 - 04:56 PM

I don't eat much bread myself. Maybe every few months or so I will get a loaf of gluten-free bread. But otherwise I don't eat it. I do get Trader Joe's brown rice tortillas sometimes to make wraps. There are also Food For Life brown rice tortillas at Whole Foods but I prefer Trader Joe's.

There is a recipe for microwave buns in the recipe section posted by Lonewolf a while back.
  • 1
Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."
Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.
Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, and hard work. have a good day! :-) Paul

#14 Marc49

 
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Posted 27 February 2011 - 09:20 AM

I don't eat much bread myself. Maybe every few months or so I will get a loaf of gluten-free bread. But otherwise I don't eat it. I do get Trader Joe's brown rice tortillas sometimes to make wraps. There are also Food For Life brown rice tortillas at Whole Foods but I prefer Trader Joe's.

There is a recipe for microwave buns in the recipe section posted by Lonewolf a while back.

Yes,....I would love to find some decent wraps for sandwiches.
I tried some large Mission white corn ones, but they crack to pieces and also make your lunch taste like corn.

Unfortunately I do not have any Whole Foods around me, only Publix, Sweetbay, and Winn-Dixie. I have been unable to find any wraps that are not corn, or flour.

Do the brown rice tortillas fold nicely like a flour one does?
Often I have to take my lunch with me and do not have access to a microwave or a toaster oven,.....that's why the gluten-free bread I have tried doesn't work for me. It's edible I guess if toasted right before you use it.

Short of that,......yuck!
I just dumped the last I had in the woods by my house. Figured maybe the animals might eat it!
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#15 mushroom

 
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Posted 27 February 2011 - 10:38 AM

You can also use rice papers for wraps. Just soak them in warm water for five minutes and they become soft and pliable. They are not big but you can make more than one. If you are wrapping something chunky you can double them up.
  • 0
Neroli


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

------------

Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

Celiac.com - Celiac Disease Board Moderator




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