Is This Gluten Sensitivity

[dream77]

Hi,

Ihad the gamut of transglutanimase and Anti-gliadin antibody tests..

The anti gliadin antibodies were positive (VERY positive..approx 4 times the upper normal limit)and the transglutinamase IgG and IgA were negative..

The doctors do not think it isgluten sensitivity because I have no harsh reactions after eating wheat..

I am 31 and have been eating wheat all my life.

Anyways.. there is still no explanation of why I have the pains I do and the neuropathy I do.

I have been off gluten for a nearly 4 weeks and expected to see some benefits after 2 weeks IF it is a gluten sensitity issue..

However there was a phase after stopping wheat that I felt very good (like 2-3 days) but the pains have been coming back.. and I am beginning to think that if it is not associated with wheat/oats I might as well start back up on eating it..

Any suggestions are welcome..

All other tests ,, multiple MRIs for MS.. Lyme .. etc etc have been done..

[veggienft]

The anti gliadin antibodies were positive (VERY positive..approx 4 times the upper normal limit)and the transglutinamase IgG and IgA were negative..

The doctors do not think it isgluten sensitivity because I have no harsh reactions after eating wheat..

I am 31 and have been eating wheat all my life.

Hi, Just think about what you said. You have pain and neuropathy, your anti-gliadin IgG antibodies are off the chart, and you've been eating gluten all your life. It seems to me that points at gluten sensitivity, not away from it.

IgG antibodies mediate blood-born gluten diseases. IgG can take six months or longer to clear the body. Presumably your lack of anti-ttg IgG means your immune system is not attacking tissue. Your elevated anti-gliadin antibodies means your immune system recognizes gliadin as an invader, and is attacking it. It's a step, but a logical one, to say that gluten is actually attacking your tissue.

In gluten-sensitivity, the tissue gliadin attacks directly is nerve tissue, and your symptoms fit that profile.

Lots of gluten-sensitive people experience what you experienced on a gluten-free diet, vastly improved symptoms initially, followed by a slow recurrence of symptoms. What usually follows that is a very slow resolution of symptoms.

Because we're dealing with nerves, I think the phenomenon is a sensitivity threshold effect. You walk from sunshine into a dimly lit room, and can't see anything. That's because sunlight raised your sensory threshold above the lower stimulus. After time you start seeing as your sensory threshold falls below the dimmed light.

That's how all sensory input works. Give the gluten-free diet a few more months before deciding.

..

[dream77]

Hi, Just think about what you said. You have pain and neuropathy, your anti-gliadin IgG antibodies are off the chart, and you've been eating gluten all your life. It seems to me that points at gluten sensitivity, not away from it.

IgG antibodies mediate blood-born gluten diseases. IgG can take six months or longer to clear the body. Presumably your lack of anti-ttg IgG means your immune system is not attacking tissue. Your elevated anti-gliadin antibodies means your immune system recognizes gliadin as an invader, and is attacking it. It's a step, but a logical one, to say that gluten is actually attacking your tissue.

In gluten-sensitivity, the tissue gliadin attacks directly is nerve tissue, and your symptoms fit that profile.

Lots of gluten-sensitive people experience what you experienced on a gluten-free diet, vastly improved symptoms initially, followed by a slow recurrence of symptoms. What usually follows that is a very slow resolution of symptoms.

Because we're dealing with nerves, I think the phenomenon is a sensitivity threshold effect. You walk from sunshine into a dimly lit room, and can't see anything. That's because sunlight raised your sensory threshold above the lower stimulus. After time you start seeing as your sensory threshold falls below the dimmed light.

That's how all sensory input works. Give the gluten-free diet a few more months before deciding.

..

Thanks veggie..

I just needed some prodding since I was self doubting .. it also gives me hope that I may become alright in a while.

SHould I get my daughter tested for these antobodies too ?

I also dream of having a second child.. any ideas on whether this is advisable given I have these antibodies.. (and I didn't mention before.. some thyroid antibodies too) ?

Also all this started only post pregnancy and after I got hit with a stomach bug..

[veggienft]

SHould I get my daughter tested for these antobodies too ?

That's up to you. I think the standard answer is, "no, not if there aren't any symptoms". But gluten intolerance has made me prejudiced. I think gluten is a pox on humanity. Looking around, I don't think anyone who eats gluten escapes suffering. If I were raising kids, I probably wouldn't have them tested.......

........but I wouldn't feed them gluten.

..

[lizard00]

I had my son tested and he exhibited no symptoms. It is possible that one can have celiac and be asymptomatic. We have a great pedi, and thankfully he ordered the tests, no questions. He completely understood.

It's completely up to you, but if you feel like getting her tested, go with your gut. It's better to be wrong than to constantly wonder.

My son, as of right now, does not have celiac. His tests came back at 0, so with his lack of symptoms and his bloodwork I am satisfied that he doesn't have celiac. For now anyway. There's always a chance later on, but for now, his diet is only limited at home.

[Guhlia]

Are you wheat free or gluten free? If you have Celiac Disease you will likely not notice a big change, if any, only eliminating wheat, especially if you're relying heavily on barley, rye, and oats to make up grain intake.

As for your child, I believe most of the leading Celiac experts recommend getting all first degree family members tested because it's a genetic disease. There are many, many, many asymptomatic Celiacs so a lack of symptoms doesn't indicate absence of the disease. Personally, I had my daughter gene tested since she was so young (3.5 at the time) and they didn't feel bloodwork would be reliable. She's now gluten free as well and very symptomatic when glutened.

[dream77]

Are you wheat free or gluten free? If you have Celiac Disease you will likely not notice a big change, if any, only eliminating wheat, especially if you're relying heavily on barley, rye, and oats to make up grain intake.

As for your child, I believe most of the leading Celiac experts recommend getting all first degree family members tested because it's a genetic disease. There are many, many, many asymptomatic Celiacs so a lack of symptoms doesn't indicate absence of the disease. Personally, I had my daughter gene tested since she was so young (3.5 at the time) and they didn't feel bloodwork would be reliable. She's now gluten free as well and very symptomatic when glutened.

ANgie,

I meant gluten free.. apologies for being not being accurate.. I am so used to saying 'no wheat' because ppl in restaurants and friends don't know what is gluten (often)

[dream77]

ANgie,

I meant gluten free.. apologies for being not being accurate.. I am so used to saying 'no wheat' because ppl in restaurants and friends don't know what is gluten (often)

The thing I really wonder about is this :-

Are there any other folks who have/had neuropathy .. (I even have facial pain) at age 31 with no reason (and everything has been tested for)

Did it EVER get better or go away once they went gluten free..

I am just eager to know if someone recovered..

(I just need hope coz I have suffering for nearly 1.5 years and am losing hope quite fast)

[GFinDC]

I had a tick above my eye that went away after going gluten-free. I think it was caused by vitamin deficiency. So I think it is possible the pain could go away, although it could take a while. I take vitamin B pills and sublingual B-12 also. Along with vit D3.

[Guhlia]

The thing I really wonder about is this :-

Are there any other folks who have/had neuropathy .. (I even have facial pain) at age 31 with no reason (and everything has been tested for)

Did it EVER get better or go away once they went gluten free..

I am just eager to know if someone recovered..

(I just need hope coz I have suffering for nearly 1.5 years and am losing hope quite fast)

My fingertips and toes used to tingle much of the time. That has gotten increasingly better over the 4+ years I've been gluten free. Most days I don't even notice it anymore. On my worst days now they just feel kind of tingly and itchy, but it never interferes with my life anymore. There are many others on the board who have experienced neuropathy to some degree or another.

[veggienft]

Okay it took a while for me to get back into gluten-sensitivity mode.

You did not state whether you had been gluten-free prior to antibody blood-testing. IgA antibodies leave the body within a few days, so a gluten-free diet could easily produce a false-negative result for celiac disease.

Baring that possibility.......

Non-intolerant gluten sensitivity involves no gluten-reactive tissue-destroying antibodies. There are three types of non-intolerant gluten sensitivity:

1. Gluten directly attacks tissue. (Likely what you have)

2. Another antigen which gluten and zonulin places in the bloodstream attacks tissue.

3. An autoimmune reaction to [the] non-gluten antigen attacks tissue.

Gluten intolerance is a case where antibodies, because of their genetic makeup, mistake gluten and its gliadin peptides for invading antigens. So gluten intolerance requires genetics as a cause. Type-1 Gluten sensitivity is a case where gluten attacks tissue. Your immune system seems to have launched a response to a gluten peptide. But this response is appropriate, and is not destroying tissue.

This is the tricky part of gluten disease. There is a real, demonstrated, destructive disease with no genetic component. If you test for one, the results will probably be meaningless. In addition, there is no basis for suspecting anything more in your family than what you have, an excessive zonulin response to wheat ingestion, and subsequent intestinal permeability.

I think cases like yours are rampant, especially involving type 2 diabetes. Your case is just one example of why the medical establishment should drastically increase research into gluten sensitivity. Resistance to this research comes from FDA and Department of Agriculture lobbies.

..

[dream77]

Vegie,

Thanks for the info.. it is very valuable.

To answer your questions

"You did not state whether you had been gluten-free prior to antibody blood-testing. IgA antibodies leave the body within a few days, so a gluten-free diet could easily produce a false-negative result for celiac disease."

[Dream] I got these tests done prior to going gluten free

"

Baring that possibility.......

Non-intolerant gluten sensitivity involves no gluten-reactive tissue-destroying antibodies. There are three types of non-intolerant gluten sensitivity:

1. Gluten directly attacks tissue. (Likely what you have)

2. Another antigen which gluten and zonulin places in the bloodstream attacks tissue.

3. An autoimmune reaction to non-gluten antigen attacks tissue."

[Dream] I did not understand 3. Can you describe more ?

"

I think cases like yours are rampant, especially involving type 2 diabetes. Your case is just one example of why the

medical establishment should drastically increase research into gluten sensitivity. Resistance to this research comes from FDA and Department of Agriculture lobbies."

[Dream] Why the mention of Type 2 Diabetes ?

I also had gestational diabetes followed by thyroiditis follwed by a stomach bug in a period of 18 months.

Bang after the stomach bug did I start experiencing neuropathy..

My family is rampant with Type 2 diabetics .. both parents.. one parent got it despite no one in her family tree having it.

Just curious about this one ?

Thanks ALOT

..

[veggienft]

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

Veggie:

Non-intolerant gluten sensitivity involves no gluten-reactive tissue-destroying antibodies. There are three types of non-intolerant gluten sensitivity:

1. Gluten directly attacks tissue. (Likely what you have)

2. Another antigen which gluten and zonulin places in the bloodstream attacks tissue.

3. An autoimmune reaction to non-gluten antigen attacks tissue."

Dream: I did not understand 3. Can you describe more ?

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

I left out the word "the". It should read:

3. An autoimmune reaction to the non-gluten antigen (of type 2) attacks tissue.

Zonulin makes the intestinal wall permeable in reaction to gluten ingestion. The partially digested intestinal contents "dump" into the bloodstream. Any of the dumped antigens can directly attack tissue. These diseases, including the diseases caused by direct gluten attack, are non-intolerance "gluten sensitivity" diseases. Any of the dumped antigens can elicit tissue-destroying autoimmune responses. The gluten elicited autoimmune responses are "gluten intolerance" diseases. The autoimmune responses elicited by other dumped antigens are again, non-intolerance "gluten sensitivity" diseases.

It's confusing because the names don't parallel the diseases. Somebody needs to develop category-specific, non-nested names for these diseases.

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

Veggie: I think cases like yours are rampant, especially involving type 2 diabetes. Your case is just one example of why the

medical establishment should drastically increase research into gluten sensitivity. Resistance to this research comes from FDA and Department of Agriculture lobbies."

Dream: Why the mention of Type 2 Diabetes ?

I also had gestational diabetes followed by thyroiditis follwed by a stomach bug in a period of 18 months.

Bang after the stomach bug did I start experiencing neuropathy..

My family is rampant with Type 2 diabetics .. both parents.. one parent got it despite no one in her family tree having it.

Just curious about this one ?

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

As Yogi Berra once said, "This is too much of a coincidence to be a coincidence."

My reference to type 2 diabetes was merely intended to demonstrate another form of direct gluten attack against nerves. My reference and your previously unreported connection to diabetes are far more than circumstance. As my last post said, when gluten attacks tissue, the tissue it attacks is nerve tissue.

Research is discovering that transduction nerves in the pancreas are responsible for regulating insulin release by monitoring blood endorphin levels. Endorphin "plugs into" these nerves. The more endorphin, the more insulin release. Gluten sensitive people dump gliadin peptides into the blood which mimic endorphin.

This constant supply of gliadin plugs into pancreas nerves, causing them to constantly flood the blood with insulin. This type 2 diabetes reaction is not a celiac reaction, or a gluten-intolerance autoimmune response. It is a direct gluten attack, just like the one causing your other nerve symptoms.

Good luck.

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DPPIV is a digestive enzyme which, given time, breaks down gluten. The "zonulin dump" arrests the action of DPPIV, and places partially digested gluten into the bloodstream. Increasing the amount of digestive DPPIV improves diabetes symptoms.

..

[ravenwoodglass]

The thing I really wonder about is this :-

Are there any other folks who have/had neuropathy .. (I even have facial pain) at age 31 with no reason (and everything has been tested for)

Did it EVER get better or go away once they went gluten free..

I am just eager to know if someone recovered..

(I just need hope coz I have suffering for nearly 1.5 years and am losing hope quite fast)

My presentations from childhood until after I had my first child were neuro and skin. After I had my second child was when I went from occasional tummy problems to it being a daily and then nightly occurance.

Most of my neuro issues did heal. I still suffer from ataxia but I can now walk unaided, something I couldn't do for years. I lost my reflexes and started dragging a leg in childhood and by my second year gluten free I had reflexes back although they are still not strong they are there. I can now walk fairly normally. My paresthesias went away within 3 months with the aid of high doses of sublingual B12 but they will still reappear for a short while if I am severely glutened. I haven't had a migraine since I went gluten free although I did still have the auras for a couple of months. My depressive episodes now only appear if glutened where before I would be depressed in waves that would happen about every other week.

Don't lose hope. Nerves do heal slowly but they can repair. I had nerve impact for almost 40 years, if I could heal as much as I have I think you can also. One thing that was key for me was realizing that although many celiacs can tolerate distilled gluten grain vinegar and alcohol for me they were a real problem. I would advise leaving those out of your diet until all symptoms have resolved and then challenge them for a week daily. If you also are sensitive to them that week will let you know.

[dream77]

Everyone,

Thank you so much for your inputs.. I am so grateful because it keeps pushing me to stay gluten free and also gives me hope.. But the last 2 days for some reason I;ve had too much increased burning in wrists and ankles BUT the one positive thing since I went gluten free is my ability to sleep at night has IMPROVED alot.. so I keep reminding myself about it..

What kind of doctor should I look for to find more about ordering the tests you all ordered and to help me out ?

I have gone to neurologists that have not taken the results seriously and I am prescribed trileptals/tegretal.

Currently Iam on a homeopathic medince, vitamins for nerves (Nervijen-D.. this is from India so I don't know if anyone will be aware of its contents ..but it has methyl cobalmanate)

Should I even go to any doc or just let it go on and staygluten free for another 3-4 months to see if it gets better..

Also.. the list of ingredients on labels don't say "wheat/oat/rye" but thing like soy lecithin, maltodextrin, corn syrup..

Are these things ok and gluten free ?

Thank you again .

[dream77]

Ravenwood,

I am sorry to know about your brother and Mom. How are your children ?

Are they celiac ?

When you went gluten free did your symtoms come and go for a while esp the neuro symptoms ?

I know my recent neuropathy feelings are not just sensory threshold adjustments .. but alot pf pain recently..

I am so concerned I have my hopes pinned on getting alright once I am gluten free ?

Did your prediabetes go away ?

I have NEVER had stomach symptoms so far and I've eaten

[dream77]

Veggie, raven,

Thanks ..

Yet, the parasthesias are back recently and they are worrisome .. maybe I ate some hidden gluten .. but I can't thik of anything I ate with gluten in the past week.

Though some things are definitely better... like the insomnia.. some fasciculations.. weakness .. some weight gain .. since I went off gluten a month ago..

the parasthesias on my foot, wrists and ankles are back big time... too much burning ..

the eye pain has gotten better but NOT gone.. it gets better and worse

I am still worried coz the above pain still nags me in the background of my activities making them ALOT less fun and making me a lot more cranky.

Is there any advice for me as to what is a good thing for me to do..

On one hand I am tired of going to docs ...

these are my options

- weather it .. wait for another month before thinking about a doc

- go to a doc .. and if so what knd of doc ? Neurologists just give me anti anxiety.. trileptals .. etc which have their own side effects.. any other doc ?

[dream77]

Any advice about my last post ?

Thank you

[ravenwoodglass]

Veggie, raven,

Thanks ..

Yet, the parasthesias are back recently and they are worrisome .. maybe I ate some hidden gluten .. but I can't thik of anything I ate with gluten in the past week.

Though some things are definitely better... like the insomnia.. some fasciculations.. weakness .. some weight gain .. since I went off gluten a month ago..

the parasthesias on my foot, wrists and ankles are back big time... too much burning ..

the eye pain has gotten better but NOT gone.. it gets better and worse

I am still worried coz the above pain still nags me in the background of my activities making them ALOT less fun and making me a lot more cranky.

Is there any advice for me as to what is a good thing for me to do..

On one hand I am tired of going to docs ...

these are my options

- weather it .. wait for another month before thinking about a doc

- go to a doc .. and if so what knd of doc ? Neurologists just give me anti anxiety.. trileptals .. etc which have their own side effects.. any other doc ?

Hi

I am so sorry it took me so long to see this. Have you gotten some sublingual B12? That will help a great deal with healing the nerve stuff. Be really careful with the homeopathics, many of them use distilled gluten grain alcohol as a vehicle and many of us with neuro symptoms are sensitive to it. Also watch those supplements for stuff like wheat and barley grass, thought by some companies to be gluten free but most of us do react.

It did take a while for my neuro symptoms to resolve and at first I was not as careful as I should have been and got CC'd a lot doing stuff like eating Lay's products and Quaker Rice cakes. I didn't have this board back then or the resources it gives. I did find that acupuncture helped me a lot with the discomfort and sleep issues I don't know if that might be something you might find helpful.

My children are both also celiac, not uncommon at all as it seems to be strongly genetic. Do urge all your first degree relatives to get tested.

I hope you get some relief soon.

[dream77]

Ravenwood..

Thanks..

Actually they tested B12 a while ago and it was more wonderful.. I don't take B12 supplements ..

I tried taking it last week and realised (maybe not related) the pain and "zzzzzzzz"/burning feeling in my legs/wrists is worse than EVER..

It seems it may be even creeping up my knees

It has NEVER been this bad..

I am quite careful with being gluten free..

mostly eat unprocessed food.

The only processed foods I am eating is this :

- kellogg cornflakes (no wheat in ingredients)

- enjoy life rice chips and other of their products

- cheese

- salad dressings (Ken's and craft .. no wheat in ingredients)

- Citracal and Iron supplement..

[maile]

umm, thought I read here that Kellog's Corn Flakes have barley malt in them???

could that be a source of your reaction?

[ravenwoodglass]

Ravenwood..

Thanks..

Actually they tested B12 a while ago and it was more wonderful.. I don't take B12 supplements ..

I tried taking it last week and realised (maybe not related) the pain and "zzzzzzzz"/burning feeling in my legs/wrists is worse than EVER..

It seems it may be even creeping up my knees

It has NEVER been this bad..

I am quite careful with being gluten free..

mostly eat unprocessed food.

The only processed foods I am eating is this :

- kellogg cornflakes (no wheat in ingredients)

- enjoy life rice chips and other of their products

- cheese

- salad dressings (Ken's and craft .. no wheat in ingredients)

- Citracal and Iron supplement..

You need to be avoiding more than just wheat. You also need to avoid barley malt, which is in the corn flakes. You should call and ask also any time you see the words 'natural flavors' in the ingredients of an item. Barley, oats and rye do not have to be clearly labeled as they are not on the allegen lists.

Also make sure all supplements and script or OTC drugs are safe, they don't even have to list wheat on the ingredient list.

[dream77]

Alright,

I will quit even the cornflakes..

I'll get the special gluten free cornflakes.

I'll call about the salad dressing or BETTER will quit them and just make my own.. vinegar + olive oil + spices..

There is nothing left to cut out..

All Iknow is the neuropathy progression is so fast I am left with nothing to do and no one to go to..

All I get is nerve pain killers and anti-depressents and though I am sad about what is going on and upset and angry coz it is a struggle to handle LIFE with silly burnings and "zzzz"ing in the wrists and legs.. now knees ... I am not depressed..

(Sorry I am venting) but am at just at my wits end to figure what I should do..

[ravenwoodglass]

Alright,

I will quit even the cornflakes..

I'll get the special gluten free cornflakes.

I'll call about the salad dressing or BETTER will quit them and just make my own.. vinegar + olive oil + spices..

There is nothing left to cut out..

All Iknow is the neuropathy progression is so fast I am left with nothing to do and no one to go to..

All I get is nerve pain killers and anti-depressents and though I am sad about what is going on and upset and angry coz it is a struggle to handle LIFE with silly burnings and "zzzz"ing in the wrists and legs.. now knees ... I am not depressed..

(Sorry I am venting) but am at just at my wits end to figure what I should do..

I know how hard things are for you right now. I have been there. It can take a while to heal and if you have been eating the Corn Flakes you haven't been gluten free yet. We all do things like that especially at first. With the neuropathies you may also be one of us who gets a withdrawl effect when they first become gluten free. That may effect your mood a bit so go easy on yourself. It will pass.

Do you know that Rice Chex are now gluten free? I always keep a box on hand.

I hope you are feeling better soon, I think dropping those corn flakes will help a great deal.

[Takala]

I am another person who has recovered a great deal out of being plagued with neuropathic symptoms that strongly resembled MS. I still have some minor buzzing constantly in my hands/arms, but this is because of the spinal stenosis and bone spurs in my cervical (neck) spine. My spine is this way because I have had spondylitic arthritis my entire adult life, but I'm unfused because that was diagnosed early ( !!! it wouldn't be now, I lucked into a good neuro back in the 1980's and haven't met any since who know what they're talking about on this, I have to carry x ray scan images with me to new doctors to prove it, they are on the fibro bandwagon and just won't fall off) and was told to take mineral supplements, avoid alcohol, and put on an exercise program to keep my range of motion . It (the neuropathy) is nothing like it was before, and even I am shocked that I have gotten this far since 2003. Two years ago I got dumped off a horse, and the stupid thing stepped on my leg before we got untangled, at the split second it happened, I thought, well, good thing I can't feel my right leg much anyway because I bet that's going to be really bad when I finally look under my pants leg later after I get Dumbo here back to the trailer. I ended up with a hoofprint on my calf muscle, which turned purple, but stayed numb. Now, that might actually hurt.

I can pass for normal most days in most situations. I just walk down steps and downhill in hiking a bit more carefully than other people. I do a lot of yoga exercises to try to keep and improve my balance.

I just wanted to throw this in here because I don't have the big sig line listing all my history, like "used to walk with a cane," "used to not be able to hold a coffee cup with one hand", "used to not be able to focus my eyes together" etc. Sometimes I have flare ups, but now I know that they will eventually resolve and are not a permanent feature.

Meditation and the technique of being able to concentrate on what I am doing instead of what my neck is doing to my spinal cord has helped me learn to ignore the buzz sensation.

Be sure if you are taking any regular medications or supplements that they are also gluten free.

If gluten is your problem, then you have to go "whole hog" and leap into the gluten free "lifestyle" without reservations and with dedication.

For the salad dressing, you can buy these glass cruett bottles with a shaker top, and put the oil in one and the vinegar in the other, and then just sprinkle this onto salads as needed with a little salt and/or sugar or other sweetener. Much easier and faster. You can also just put some oil and vinegar into a cup or bowl and add some gluten free mayonaise or ketchup or mustard or honey and make all sorts of salad dressings that are better tasting than the commercial varieties.

When eating out, I just ask for an oil and vinegar set up (that gets me the oil in the cruett bottle) and a wedge of fresh lemon for the salad. This solves the problem of "what is in that vinegar, anyway?" Lemon and oil on salad, with a shake of salt and maybe pepper and a tiny amount of sweet and low, is really good.