Celiac neuropathy
 

Hi everyone, I am in the process of trying to get a diagnosis for PN. My neuro doc is having me tested for celiac disease but I have already had a ton of testing. If I had celiac wouldn't it show up in my metabolic blood tests? Everything came back normal.

No, the blood work for gluten intolerance involves special
antibody tests. Those are ordered separately.

https://sites.google.com/site/jccglu...gnostictesting

Also, if you are just sensitive to it, it will not show up. Easier just to stop eathing gluten.

how long should I go gluten free to know if it is helping or not?

If you go gluten free, you can't do testing. Gluten has to be in your system a while to show up on blood work.

So if you go Gluten free on your own, you may see some positive little changes in a month or so..better digestion, better stools, more energy. Gluten sensitivity affects many things.

Damage to nerves may take a while to improve. 3-6 months or more. The body has to remove all the antibodies and that takes time. Then the nerves have to heal, and that is more time.
People will vary in healing times depending on their diet and supplement support for healing. It is not a quick thing for the nerve issues, at all.

MrsD, I opened the testing site for celiac and now I am confused.

My dd had some type of tests done but they did not get that involved. I only see on her results the actual food item/IGG and the range.

If, for WHEAT (GF4) IGG she ranged at 17.8 H does this mean she is sensitive to wheat? But not necessarily gluten sensitive?

Then there is another result for CELIAC DISEASE COMPREHENSIVE PANEL TISSE TRANSGLUTAMINASE ANTIBIODY, IGA which is in range: <3

Then below it reads: IMMUNOGLOBULIN A 515H (out of Range)


She ran high out of range for every food sampled other than Cheddar Cheese. Should she have had other tests?

I will not turn this into a thread about my dd, but I felt this info is pertinent to the OP, in the event these same tests are run, only.

Can they be used to determine actual gluten sensitivity?

I really don't have a good foundation for the Celiac results.

Maybe Glenn can help here... He usually comes on in the mornings.

This is just my opinion, but it may all depend on how you feel. If you go completely gluten free - which includes foods, drinks, gravies, cereals, additives in many processed foods, and PERSONAL products - you might want to keep a journal of sleep, brain fog, pain, etc.

As one person said, you don't/won't know if there is inflammation/damage being done while eating gluten. But if you stop it completely - you STOP the damage and inflammation it causes. Diet is the most important thing one can do for their health. Completely remove wheat/rye/barley from your life. There are alternatives. There are choices.

My dd was so sensitive and still is - just to the TOUCH of gluten. She sleeps. Almost as if she has encephalitis!?

the celiac panel, looks like they ran one test and reflexively canceled the rest when that one was neg. the IgA at 515 is the TOTAL IgA, an elevated value is not uncommon in celiac. The GF4, don't know that one. She is gluten free now, yes? So the window for any other testing is closed. In another post, I think you mentioned a potential issue with Gardisal? If so make sure that gets reported. And, tell your daughter that a doc CAN NOT demand you take anything!

The GF4 IGG
 

--is, I believe, part of an allergy panel and tests for allergy to wheat, but is not specific to autoimmune reaction to gluten peptides.

Pabb is correct; that elevated IgA often happens in celiacs (and a number of other conditions), and it looks like they only did the anti-transglutaminase IgA to look for frank celiac, as this is the test most often associated with frank villous damage. Still, as many as 20% of biopsy-proven celiacs have negative anti-transglutaminase test results . . .

They probably should at least run an anti-glidain IgA and IgG--more sensitive to overall autoimmune reaction to gluten, though less specific.

Thank you SO VERY MUCH pabb and glenntaj (always MrsD!!):grouphug:

I have watched my gorgeous life loving and vibrant dd slowly morph into a tired, overweight, unhealthy, fed up and sometimes NOT EVEN THERE person I don't know.

All beginning with the removal of her left lobe of her thyroid because the nodules MIGHT be cancer...negative. This was at 19 yo - 8 years ago.

Along with the Hashimotos, hypothyroid, pcos, ebv, anemia, adrenal gland fatigue, estrogen dominance, food sensitivities, extreme fatigue, brain fog, mood swings - we are adding severely sore/swollen fingers in the morning!! (That pesky Round 1 of Gardasil given during undxd mono! REALLY haunts me...)

Where do I begin? There is a test result with the above referenced bloods for ALLERGEN (IGG) IMMUNOCAP GLUTEN GLUTEN IGG* results: 17.8 H This test has not been cleared or approved by the FDA.

tsmitty, what tests were ordered for YOU? Are you considering a biopsy *be sure they take MANY SAMPLES ALL OVER!! - for you will need to eat gluten. Actually, you DON'T NEED gluten, so say goodbye to it - forever. Look at all the issues surrounding it as well as RYE and BARLEY *and I feel corn and peanuts too! Oh, and alcoholic beverages.

But that is just my opinion. I am not sensitive or allergic - as for my endoscopy results six years ago, but I am GF today. Just because I like me. :wink:

GENOVA DIAGNOSTICS Celiac & Gluten Sensitivity
 

tsmitty - is this the testing you had? For I found the LAST page of my dd's testing and it reads: Total IgA 336 and is sufficient
Anti-Tissue Transglutaminase IgA (tTG IgA) at 1.6 and is Negative
Anti-Deamidated Giladin IgA (DGP IgA) at 8 and is Negative
Anti-Giladin IgA (AGA IgA) result at 4 - Negative
Anti-Giladin IgG (AGA IgG) is at 14 and Negative

"Patient results are Normal."

Would like to know which blood tests were run, on you, if you want to share. The tests above found her to have antibodies to several random foods that she needs to "rotate."

Do you have any issues with thyroid? Her tests were ALWAYS normal and within range. It was her swollen neck that caused the doc to order an ultra sound and found the nodules.

I believe it was the gliaden antibodies test. I will not know for about a week.

There is evidence--
 

--which JCC has accumulated in The Gluten File (easily Googled, and also linkable through our own Gluten Sensitivity/Celiac forum here) that doctors should not necessarily be dismissing an isolated anti-gliadin IgG elevation.

While this is the least specific celiac test, it is the most sensitive, and according to the work of Dr. Hadjivassiliou in Europe, it is often associated with neurological manifestations of gluten sensitivity, such as neuropathy and gluten ataxia, and it may be more associated with another genetic subtype--HLA-DQ1--than gastrointestianl manifestations of gluten sensitivity, which is more closely associated with genetic subtypes HLA-DQ2 and HLA-DQ8.

Take a look at:

https://sites.google.com/site/jccglu...ationsofgluten

good heavens, you can't win for losing. they should have done the deaminated IgG, not IgA.