Gluten Intolerance

[DaCat]

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!

[SunnyDyRain]

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! )

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.

[tarnalberry]

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.

[Lisa]

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.

[ArtGirl]

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.

[lonewolf]

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.

[VydorScope]

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...)

[DaCat]

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!

[Momelf]

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.

[wowzer]

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.

[mamaloca2]

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.

[Guest Doll]

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.

[kbtoyssni]

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.

[NY547]

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.

[AndreaB]

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.

[Karen B.]

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!

Celiacs and the gluten intolerant share a common "enemy" and we have people at our group that weren't biopsy diagnosed or have been diagnosed as gluten intolerant or even just have a wheat allergy.

Have you checked the list on this website for a local group?

List of Local Celiac Disease Support Groups/Chapters

[ArtGirl]

After spending a little over a year on this board and reading many people's responses - some scientific, most just relating experiences, it is my personal opinion that all who react to gluten are Gluten Intolerant, even though there are many contributing factors that result in this condition.

Those who have been diagnosed with villi damage (with the associated malabsorbtion issues) or DH and/or have certain genes are labeled as Celiac. Those without intestinal damage, no detectible malabsorbtion and certain other genes are labeled Gluten Intolerant. Both conditions can contribute to other autoimmune diseases and/or neurological and psychological problems. Each individual's body handles gluten in a different way with varying results.

I feel fairly certain that after some more years of research that it will all be listed under the same condition with subclassifications. However, whatever the label, the treatment for all is the same - gluten-free for life.

[Babygirl6915]

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!

So here is my input for something a little different... I have a wheat allergy. It has been "medically confirmed" that i do not have celiac. But I post on this board & talk to some people in the Dallas Area celiac group as they are much more in tune with my experiences than others you will find on general allergy boards.

That being said, I have no different a view on gluten than anyone else here does. Just b/c you have no seen symptoms does not mean you are not doing harm to your body. Even if my allergy magically "goes away" (which hardly seems possible) I will continue to not eat wheat. IMO once gluten intolerant, always gluten intolerant. Wheat & grains are not all they are cracked up to be. It is very tough @ first & I still have moments of weakness but in the end I feel like an entirely new person now that I am gluten-free. And I would like to stay that person too!

[munchkinette]

I would strongly recommend committing to the diet. Here's what happened to my grandmother:

She was diagnosed with some kind of wheat problem in her 20s, just like me. This was the 1940s, so the tests weren't advanced enough to distinguish between celiac, non-celiac gluten intolerance, etc. She went on a strict diet for a few years. They told her she grew out of it because he insides did heal. At that time I'm sure they thought she did grow out of it. By the time she died at 85, she had about half the problems listed in books about untreated celiac disease, including diabetes (and eventually carpal tunnels), one autoimmune disease (scleroderma), arthritis from a young age, trouble conceiving and keeping babies, and eventually liver failure from a lifetime of all the drugs needed to compensate for her various conditions.

I'm leaving out a lot of things on the list because I can't find it right now. My point is that I have no trouble keeping to the diet after seeing what 85 years of eating gluten can do to a person who shouldn't have gluten.

[Rachel--24]

I'm gluten intolerant (non-Celiac). At this point I have no reason to believe that this is indeed a life-long situation for me.

I'm working with some great Dr.'s and its definately possible for some people to lose this intolerance with treatment of underlying issues and healing.

Everyone is different...I'm told I will have to wait until I'm well to determine whether or not gluten will continue to be a problem for me.

For now...I am being treated for the things which have led to the gluten intolerance in the first place.

If I chose not to address these underlying issues...then YES...I most certainly would need to avoid gluten for life. It would be a life-long situation because the circumstances which have caused my body to no longer tolerate gluten (as well as a long list of other foods) would remain unchanged.

I dont think its accurate to state that ALL cases of non-celiac gluten intolerance require life-long dietary restrictions. It really depends on the actual *cause* of the individual's gluten intolerance. If its not Celiac...then what is it??

There are many *treatable* conditions that can lead to a gluten intolerance.

If some people are not looking into underlying issues that may be contributing....they *may* remain at risk for many of the same conditions they are trying avoid by not consuming gluten.

Alot of those who have non-celiac gluten intolerance are not well even while following the diet...this is a good reason to dig a little deeper for answers.

[CarlaB]

Yes, I agree with Rachel 100%. In fact, I am an example of it.

People like Munchkinette's grandmother are undiagnosed celiacs and need a lifetime of eating gluten-free.

However, my own gluten intolerance, which was very severe, I was sensitive to even the smallest crumb, is completely gone! I have Lyme Disease and had heavy metal toxcity. With both of those being treated, my intolerance to gluten has now gone away completely.

It has taken a couple months for me to be sure, but I am sure, it is gone.

I was one of those who got sicker when I ate gluten or got any kind of contamination, but never got completely well on a gluten-free diet. I tried cutting out soy, corn and dairy for 6 months as well, but no improvement over the intitial improvement I had upon starting to eat gluten-free.

I am not implying that everyone who is non-celiac gluten intolerant will get better and be able to eat gluten again. I think some people truly have gluten problems and have negative celiac tests. Obviously there is much to be learned about this.

I also find it interesting that the ONLY sensitivity to food I had was to gluten. This happened to my daughter as well. Once her Lyme and heavy metals were treated, she was no longer sensitive to gluten at all. This is the same daughter who was begging to end a gluten challenge after only three days back in December.

For those who are curious, my Enterolab score was IgA 60. I also was over 30 on my casein score, but never had any changes dairy-free for six months. I was obviously having a very strong immune reaction, but I think that was from my leaky gut and my overactive immune system due to the Lyme Disease. My celiac blood tests were negative and I am negative for celiac genes.

I still eat gluten-free at home because I think it's a healthy lifestyle ... and I mostly eat gluten-free out, but I don't worry about ingredients like I used to. I believe that gluten is not very healthy for many reasons.

[marciab]

Is it possible that those who are gluten intolerant and find that they can eat gluten again don't have the celiac genes DQ2 or DQ8 ?

It would explain why some can eat gluten again and others can't ... And goes along with what someone else said about only people with those genes getting celiac.

[CarlaB]

Is it possible that those who are gluten intolerant and find that they can eat gluten again don't have the celiac genes DQ2 or DQ8 ?

I do not have celiac genes.

[Rachel--24]

Is it possible that those who are gluten intolerant and find that they can eat gluten again don't have the celiac genes DQ2 or DQ8 ?

It would explain why some can eat gluten again and others can't ... And goes along with what someone else said about only people with those genes getting celiac.

Yes...Celiac is genetic....so those who do not carry these genes do not necessarily require a life-long gluten-free diet.

If they can identify and resolve what might be causing their gluten intolerance...it may be something that they can overcome with proper treatment.

I do not carry Celiac genes.

My concern is that in saying that EVERY person with gluten intolerance requires a life-long diet.....it may lead them to believe that gluten is the sole cause for their symptoms/suffering....when often there are underlying issues that end up getting ignored.

If other health problems are left undiagnosed....the consequences may be just as damaging as continuing to consume gluten (while intolerant).

[marciab]

Thanks Carla,

Thats what I was wondering. I noticed that Rachel doesn't have the DQ2 or DQ8 gene either.

I'm a DQ2, who was diagnosed a celiac earlier this year by my GI based on an EGD done 17 months post gluten-free which showed damage. It was noted as possible healed celiac.

You know, it'd be just my luck that I'm a celiac who was bitten by a tick ...

Hi Rachel,

We were posting at the same time ..

BTW. Did either of you have problems with gluten as a child ?