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Gluten Intolerance


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#1 DaCat

 
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Posted 08 May 2007 - 05:00 PM

I really need some help here......

I am currently seeing a naturopath and an MD that practices holistic medicine. One is telling me that my gut can be healed and eventually I can ingest gluten again (naturopath) and the other is telling me after staying off gluten for 6 months, I can then ingest, but only once a week for life - if I can tolerate (holistic MD). Which is true? At this point, I have not been diagnosed with Celiac.

Testing I've had done specific to gluten issues:

gliadin AB, SIgA (saliva): 34 (range: positive if >15 U/ml *high* [Diagnos-Techs]
food sensitivity IgG & IgE (blood): low for "wheat" gluten & "wheat" gliadin [US Bio Tek]
Gliadin IGG (blood): 59.5 (equivocal: 25.1-49.9) *high* [Mayo Clinic]
Gliadin IGA (blood): 28.2 (equivocal: 25.1-49.9) [Mayo Clinic]
Enodmysial AB: negative [Mayo Clinic]
Reticulin ABS: negative [Mayo Clinic]

(I did ingest gluten for a few months before having the Enodmysial, Reticulin, IGG & IGA (blood) test.)

How can I show positive for gliadin on a saliva and blood test, but not show positive for wheat gluten or wheat gliadin on the food sensitivity test? That baffles me!

I would really like to know if I must remain gluten free for life or not. If anyone can help me with this I would greatly appreciate it.

Also, what occurs in the body when one is gluten intolerant and ingests gluten? Any web sites/links you could post?

Thank you for your time!
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#2 SunnyDyRain

 
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Posted 08 May 2007 - 05:28 PM

I really need some help here......

I am currently seeing a naturopath and an MD that practices holistic medicine. One is telling me that my gut can be healed and eventually I can ingest gluten again (naturopath) and the other is telling me after staying off gluten for 6 months, I can then ingest, but only once a week for life - if I can tolerate (holistic MD). Which is true? At this point, I have not been diagnosed with Celiac.

Testing I've had done specific to gluten issues:

gliadin AB, SIgA (saliva): 34 (range: positive if >15 U/ml *high* [Diagnos-Techs]
food sensitivity IgG & IgE (blood): low for "wheat" gluten & "wheat" gliadin [US Bio Tek]
Gliadin IGG (blood): 59.5 (equivocal: 25.1-49.9) *high* [Mayo Clinic]
Gliadin IGA (blood): 28.2 (equivocal: 25.1-49.9) [Mayo Clinic]
Enodmysial AB: negative [Mayo Clinic]
Reticulin ABS: negative [Mayo Clinic]

(I did ingest gluten for a few months before having the Enodmysial, Reticulin, IGG & IGA (blood) test.)

How can I show positive for gliadin on a saliva and blood test, but not show positive for wheat gluten or wheat gliadin on the food sensitivity test? That baffles me!

I would really like to know if I must remain gluten free for life or not. If anyone can help me with this I would greatly appreciate it.

Also, what occurs in the body when one is gluten intolerant and ingests gluten? Any web sites/links you could post?

Thank you for your time! :o)


I don't understand the bloodwork, I'm still learning. But this is what I understand...

If you have a Wheat allergy, this may get better.
If you have some gluten intolerance, you may be able to eat small amounts and tolerate them. I stand corrected.... the girls below know much more than me.
If you have Celiac Disease, there is no acceptable amount of gluten to eat. The smallest amounts can still damage your intestines.

This site has massive amounts of infromation. Take a deep breath, and just start reading. Try not to get overwhelmed. This diet is doable.
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Dx 3/23/07
Gluten free 3/27/07


Intolerant:
Gluten
MSG

Allergies:
Ragweed
Honeydew
Cantalope
Nickel (jewelry)


Dx'd Lymphocytic Colitis 6/16/08

I am a bad silly-yak!



#3 tarnalberry

 
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Posted 08 May 2007 - 05:34 PM

Given the IgG responses, I'd say that you are at least gluten intolerant - for life. They didn't run a tTg, so it's hard to guess at damage - and hence a celiac diagnosis.
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Tiffany aka "Have I Mentioned Chocolate Lately?"
Inconclusive Blood Tests, Positive Dietary Results, No Endoscopy
G.F. - September 2003; C.F. - July 2004
Hiker, Yoga Teacher, Engineer, Painter, Be-er of Me
Bellevue, WA

#4 Lisa

 
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Posted 08 May 2007 - 05:39 PM

Let me state this upfront, I do not deal with numbers.

But you need to get some new doctors. They have now right to give you that source of information. Both are seriously misinformed.

If in fact you have Celiac, it is forever, It is a lifetime commitment. Yes, the gut can be heal, but only with a complete commitment to a gluten free diet.

Both of your recommendations have no clue.

You will get more answers here. Glad that you have joined us.
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Lisa

Gluten Free - August 15, 2004

"Not all who wander are lost" - JRR Tolkien

#5 ArtGirl

 
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Posted 08 May 2007 - 06:50 PM

I'm afraid Lisa (MommaGoose) is right. Once you become intolerant to gluten, you can never go back to eating it. There's more going on than just what's happening in the gut. Celiac or intolerant. Maybe there's less intestinal damage being done if you're "only" intolerant, but there's also other problems that you probably aren't aware are gluten related. And you'll not be able to resolve these other issues if you're still eating gluten.

I'll give you an example about myself. The GI issues were slow to clear up, but I did notice a lightening of my spirits and eventually I came out of a funk I had been in for I don't know how many years - probably 30 or more. I can say that I now know what it is to be happy. Something that never happened to me while eating gluten. Also, just this week, after being gluten-free for nearly a year, I noticed the exzema on my face has disappeared.

Some people who post on this forum regularly, who are "only" gluten intolerant, had serious psycological issues - depression, anxiety - for which they were on many meds. After going gluten-free they found that these things improved and they were able to go off the meds. It was gluten all the time, but no one knew that.

If you choose to begin eating gluten-free, take the diet seriuosly and go 100% gluten-free - no eating gluten once a week, or even once a month. I'm sure you'll be glad you did.

And, yes, you'll learn more here than from anyother source, especially doctors who really aren't that well informed.
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Valda
Enterolab results: ...two genes for gluten intolerance ...casein intolerance
other sensitivities: corn, eggs, soy, potato, tapioca
Hypoglycemic
Sensitivity to high EMFs [electromagnetic frequency] (limits my time in front of the computer)
Living a healthier, happier life.
-------------------------------------------------------------------------------------------------------------------
If I take the wings of the morning, and dwell in the uttermost parts of the sea, even there shall thy hand lead me, and thy right hand shall hold me.Psalm 139: 9,10

#6 lonewolf

 
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Posted 08 May 2007 - 08:42 PM

Eleven years ago I was told to avoid wheat and that I should "watch" gluten. The test I had done showed off the chart numbers for wheat gluten, gliadin, rye, barley and oats, but the doctor crossed those out and said I really just needed to avoid wheat, that so many people had high scores on those that he thought they were false positives.

I was told that if I avoided wheat for several years that I'd be able to add it back in once my gut healed. I stayed "mostly" gluten-free for about 7 years and had a dramatic improvement in my health, although I noticed that I would sometimes get stomach aches that I couldn't figure out. (I now know that it was things like barley malt that I didn't think I had to avoid.) I decided to add spelt, since I'd heard it was low in gluten and that many people who were allergic to wheat could have it. Big mistake. I started having GI problems again and developed an autoimmune kidney disease. After going gluten-free (and taking some nasty medications) I regained my good health, kidney disease in remission for just over 3 years now. I learned a bit more about hidden glutens and have been fanatically gluten-free for about 1-1/2 years now.

I don't have Celiac. I can't have it because I don't have the correct genes. I'm only gluten intolerant for whatever reason. BUT I CAN'T HAVE GLUTEN EVER AGAIN, NO MATTER WHAT ANY DOCTOR OR ANYONE ELSE TELLS ME.

My guess would be that if you are gluten intolerant it's for life. But take it from me - it's worth it. I wouldn't trade my good health for all the Krispy Kreme's in the world.
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Liz

Started Specific Carbohydrate Diet on 8-16-09 because son was diagnosed with Ulcerative Colitis and want to give him moral support.

Diagnosed with Minimal Change Nephrotic Syndrome in 2003. Discovered that going completely gluten-free put me in remission.

I would have despaired unless I had believed that I would see the goodness of the Lord in the land of the living. Psalms 27:13

#7 VydorScope

 
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Posted 09 May 2007 - 01:58 AM

Everyone in this thread that said stay away from gluten , for life is correct. I am guessing that these docs are confused by:

The so called CODEX standard that implies "very low gluten" is good enough (unless its been updated?)

OR

The fact that different people react to different levels of gluten in different ways because they are different. Some one with celiac disease or gluten intolerance, or what ever label is given CAN eat gluten with NO SYMPTONS occasionally. Unfortunitly this does NOT mean no damage is done, just that they did not have out ward symptoms that time.

OR

(this is what I suspect) This docs in question worship at the church of the great FDA pyramid and can not imagine a life not based on the most holy of all whole grains... WHEAT.. so they figure that once a weak will limit any damage to a healable / acceptable amount and allow you to consume the greatest of all the worlds food.. WONDER BREAD! :) (yes you did detect the ever so slightest amount of sarcasm in that...)
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#8 DaCat

 
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Posted 09 May 2007 - 04:35 PM

Thank you ALL for your responses. It helps having others share their experiences & knowledge. I love forums for that reason! Anyway, "knowing" it's a lifelong thing helps me right now.

I know I felt better being completely off gluten for months after finding out I had a problem with it so I guess it will be encouraging to see how I feel after more time goes by this time (I'm off gluten again since tests are over). I mean, I didn't feel great when I was off it before because I have other issues being dealt with too, like: high mercury/lead levels, leaky gut etc.), but some of my symptoms seemed to improve.

By the way, does anyone have any web sites/links suggestions that is soley about gluten "intolerance" and how that affects the body? I know the "treatment" is the same for GI and Celiacs, but gluten does affect the body differently in each case. I know symptoms can be the same, but the damage in the body is apparently different. I don't think a person who is only gluten intolerant has flatten villi. I would like to know what does happen in the body then. Seems like I read somewhere that there can be damage to internal organs etc. I read the book Dngerous Grains which is good, but I'd like more info. Thanks to anyone who can help me. I want to know as much as I possibly can re: what I am dealing with.

Oh, one more question: has anyone here who is gluten intolerant only been to a "celiac" support group and found it to be helpful? I'm considering this for myself. Not sure we have a gluten intolerance support group. Heard those are hard to come by anyway. <_<

Thank you and God Bless!
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#9 Momelf

 
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Posted 15 June 2007 - 12:38 PM

I am very grateful to everyone on this thread. It's been extremely helpful to me as I am in the same place, dealing with other health issues also (interstitial cystitis). I'll learn to become a "regular" on these message boards!

Thanks again.
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#10 wowzer

 
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Posted 15 June 2007 - 08:08 PM

Although I had negative bloodwork, I went gluten free anyways. I had so much improvement even in the first couple weeks that my family doctor said to stay gluten free for 3 months. It'sl been 6 months now for me. I know that I can't go back to gluten. If I even get a trace of it I know now. I have a little sister that was diagnosed at a year. In her teenage years, my family thought she was in "remission" because she seemed to tolerate it. She was anemic as a teenager. I'm sure the gluten didn't help. She now has persnickity anemia, fibromyalgia, rhemuatoid arthritis and thyroid. I'm sure that maybe these things could have been avoided if she remained gluten free. She is 7 years younger than I am. I do have asthma and thyroid. I'm hoping to avoid any other problems myself. I just wish it had been figured out sooner for me.
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#11 mamaloca2

 
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Posted 25 June 2007 - 08:07 AM

By the way, does anyone have any web sites/links suggestions that is soley about gluten "intolerance" and how that affects the body? I know the "treatment" is the same for GI and Celiacs, but gluten does affect the body differently in each case. I know symptoms can be the same, but the damage in the body is apparently different. I don't think a person who is only gluten intolerant has flatten villi. I would like to know what does happen in the body then. Seems like I read somewhere that there can be damage to internal organs etc. <_<


I am still learning as well, but pretty sure Daughter and I are gluten intolerant. I have many of the same symptoms of celiac and this forum has helped me so much. I don't know much about the differences yet. I am very skeptical of doctors now, but my naturalpath is very good and seems to know the most. he told me that gluten intolerance causes intestines to become inflamed and leads to basically all the same problems as celiac because inflamed intestines cannot absorb nutrients effectively. But I think there is still a big debate about the difference between the two. But I've noticed that my symptoms clear up faster after gluttening than most people with celiac say theirs does. It would make sense if my doc is right. Good luck with the research.
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#12 Guest_Doll_*

 
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Posted 25 June 2007 - 03:22 PM

Although I had negative bloodwork, I went gluten free anyways. I had so much improvement even in the first couple weeks that my family doctor said to stay gluten free for 3 months. It'sl been 6 months now for me. I know that I can't go back to gluten. If I even get a trace of it I know now. I have a little sister that was diagnosed at a year. In her teenage years, my family thought she was in "remission" because she seemed to tolerate it. She was anemic as a teenager. I'm sure the gluten didn't help. She now has persnickity anemia, fibromyalgia, rhemuatoid arthritis and thyroid. I'm sure that maybe these things could have been avoided if she remained gluten free. She is 7 years younger than I am. I do have asthma and thyroid. I'm hoping to avoid any other problems myself. I just wish it had been figured out sooner for me.



I wouldn't worry about the past. There is no published scientific evidence to suggest that being gluten free would have entirely prevented either your other diseases or hers. Perhaps *delayed* them, but not prevented them entirely.

All of those diseases are genetically related, beyond that, nothing more can be drawn at this point. It is likely they all have different triggers.

Asthma is an inflammatory state that is basically the "leaky gut" of lung tissue. People with the genetics for a leaky gut and/or "leaky lungs" often have allergies, asthma, and autoimmune diseases. It's not unheard of for these all to cluster. Some researchers consider asthma to be an autoimmune disease.

Basically, you (and your sister) have an over-reactive immune system, a lack of regulatory T-cells and/or a misguided immune system, and "leaky" points of entry for increased exposure to poossible triggers. The cause of autoimmunity is thought to be genetic disposition and an environmental trigger such as a virus. Exposure to dietary proteins like gluten *may* cause these diseases to appear sooner, but gluten itself is NOT the cause. Children on the strict gluten-free diet *still* go on to develop other autoimmune diseases as well. For some reason people seem to forget this. Gluten *may* play a role, but the gluten free diet is only part of the puzzle.
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#13 kbtoyssni

 
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Posted 05 July 2007 - 10:51 AM

Gluten is what damaged your gut to start with so if your gut heals and you start eating gluten again, you'll be right back where you are now. I think of gluten intolerance as the first stage on the road to getting celiaa. Think of yourself as lucky - at this point you're "only" gluten intolerant and you haven't damaged your gut enough to have full-blown celiac. If you continued to eat gluten for a few more years, you likely would be diagnosed with celiac and have a lot more damage.
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Gluten-Free since September 15, 2005.
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#14 NY547

 
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Posted 15 July 2007 - 04:41 AM

Gluten is what damaged your gut to start with so if your gut heals and you start eating gluten again, you'll be right back where you are now. I think of gluten intolerance as the first stage on the road to getting celiaa. Think of yourself as lucky - at this point you're "only" gluten intolerant and you haven't damaged your gut enough to have full-blown celiac. If you continued to eat gluten for a few more years, you likely would be diagnosed with celiac and have a lot more damage.


OK, I have to jump in here. Maybe I'm missing something...

I do agree with kbtoyssni in that gluten intolerance can often become celiac down the road. And I also agree you can have all the same symptoms as a person with diagnosed celiac disease even without the villous atrophy.

My concern after reading all the posts is DACAT, how do you know you do NOT have celiac disease? From what I read you have only been tested for Gliadin antibodies. The ema and reticulin have been known to come back negative in 60% of people with DIAGNOSED celiac!

You may want to consider asking for the TTg antibody (tissue transglutaminase) and a total IgA level. Your Gliadin IgG is high in both blood and saliva, yet your gliadin IgA was in the normal range. I would not rule out a diagnosis of celiac just yet. Especially since you mentioned "leaky gut"

I would talk this over with your doctor before staying gluten free any longer. Also, there are many seronegative celiacs out there, who test negative for the TTg Iga and still go on to show signs of damage on the endoscopy. The IgA levels are indicators of the amount of damage that's been done, so if you only have partial villous atrophy at this point, or only the intraepithelial lymphocytes (IEL) your blood tests could still come out negative.

One last point, the celiac genes they test for are the DQ2 and DQ8. It has also been shown that people with DQ1 can develope celiac, but their symptoms are often more outside the gut (ie neurological, dermatitis herpetiformis, etc). Just because you didn't test positive for DQ2 or DQ8 doesn't mean you will never develop celiac.
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#15 AndreaB

 
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Posted 15 July 2007 - 09:37 AM

Hi. I have come to believe that gluten is not a good thing.

If you are intolerant and your symptoms clear up gluten free you have your answer. Whether or not you have celiac you would be gluten free for life.

There is a small chance that something else could be causing the gluten sensitivity BUT I still don't think gluten is good for you. If your symptoms don't resolve then you need to dig deeper. If something else is causing the intolerance then I'd still suggest gluten free, you just wouldn't have to be as careful with cross contamination.

I have a book called Dangerous Grains that list gluten free as helping with symptoms of 150 different diseases.
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Andrea

Enterolab positive results only June 06:
Me HLA-DQB1 Molecular analysis, Allele 1 0201; HLA-DQB1 Molecular analysis, Allele 2 0301; Serologic equivalent: HLA-DQ 2,3 (subtype 2, 7)
Husband HLA-DQB1 Molecular analysis, Allele 1 0201; HLA-DQB1 Molecular analysis, Allele 2 0302; Serologic equivalent: HLA-DQ 2,3 (subtype 2,8)



The whole family has been soy free since February, gluten free since June 2006.

The whole family went back to a gluten diet October 2011.  We never had official testing done and I decided to give gluten a go again.  At this point I've decided to work on making some gluten free things again, though healthwise everyone seems to be fine.  The decision to add gluten back in was also made based on other things I'd read about the 2nd sequence of genes.  It is my belief that we had a gluten intolerance, but thanks to things I've learned here, I know more what to keep an eye on.  If you have a confirmed case of celiac, please don't go back to gluten, it's a lifelong lifestyle change.





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