Question About Celiac Disease

[balor123]

Hi everyone,

New to the group and have some questions. I've been showing some neurological symptoms (aching, twitching, exercise intolerance, now tingling in arms/legs) and my GI said that these can be due to Celiac disease in 10% of patients. He did a blood test for the IgA-ttg antibody and it came back positive (30 vs lab max of 20) but then the biopsy was negative. Is a positive value on this test interesting still? Could those antibodies be causing neurological problems? Does it take time to show up on the biopsy? Have others here shown neurological symptoms and how successful was going gluten-free free and how long did it take to notice a difference? I also have a few other health problems like Gastroparesis and Sleep Apnea but it's not clear which is causally related to what. Thanks for the help!

[adab8ca]

Hi everyone,

New to the group and have some questions. I've been showing some neurological symptoms (aching, twitching, exercise intolerance, now tingling in arms/legs) and my GI said that these can be due to Celiac disease in 10% of patients. He did a blood test for the IgA-ttg antibody and it came back positive (30 vs lab max of 20) but then the biopsy was negative. Is a positive value on this test interesting still? Could those antibodies be causing neurological problems? Does it take time to show up on the biopsy? Have others here shown neurological symptoms and how successful was going gluten-free free and how long did it take to notice a difference? I also have a few other health problems like Gastroparesis and Sleep Apnea but it's not clear which is causally related to what. Thanks for the help!

Well, good on the GI for knowing this! My symptoms are almost all neurological with nerve pain and damage and it turned out to be Celiac.

If there is not a lot of damage, the biopsy can indeed be negative. The positive blood work is very interesting. It is just possible that you did not have that much damage. I did have incredible amounts of damage and NO GI symptoms and after 6 weeks gluten-free, I think I am not getting worse. Nerve damage can take a long time to heal. You may want to have your B12 levels checked as well as this can contribute to the nerve problems.

All the best!

ada

[IAtodd]

My IGA levels were too low to be conclusive and I've not done the biopsy. I've been gluten-free for 3+ years and at first, if I accidentally ate wheat, I would get the stabbing abdominal pain like I had suffered with all my life. Now if I eat gluten (once every few months... most recently, the topping picked off of one slice of Pizza Hut pizza), I don't get the abdominal pain... I just have neurological effects much more severely than I ever have (hypersensitive skin, ataxia, peripheral neuropathy, lethargy... I'm assuming my intestine has healed up and a little dose of gluten doesn't wreak the havoc that it used to). I don't think the antibodies themselves would cause the neurological problems, if that's what you're asking...

[T.H.]

I remember when I was studying the neurological effects early on, I found a study on neurological damage that was gluten triggered, but the patients showed not damage in the gut. As I understand it, there was disagreement whether this meant the damage was due to celiac disease or not, because of the gut non-issue. I honestly have no idea where the study is - I think I found it from a link on a forum discussion on this site, actually, so perhaps if you searched for that here, it might pop up?

But I'd say, if your blood test was positive, and you have neurological symptoms, it couldn't hurt to go gluten free, and it might really help, so personally I'd go for it.

Talking to others with neurological symptoms - and in my own case as well - there does seem to be a higher prevalence of people who are really sensitive to gluten, to lower than the 20 ppm of gluten that many gluten-free products have. So if you see an improvement, but it never goes away, you can try to go even MORE gluten free, as it were.

For my symptoms:

I had tingling in my arms and hands that was attributed to a partially herniated disc, carpal tunnel, etc... I've had it for nearly ten years now. I had numbness in my toe that was attributed to an injury. I had vertigo and dizziness that no one had a clue what they were.

They are all gone since I've gone gluten free. Completely and totally gone. And the vertigo is something that happens now every time I get CC by gluten, so I know that sucker was from the gluten.

I'm honestly not sure how long it took for mine to all go away, because I wasn't really thinking they were celiac related, so I wasn't paying attention. But I think for some of them, it took at least a few months, 2-4, probably. Other symptoms disappeared right away when I actually got completely off of gluten, but the neuro ones took longer, as I recall. But I do know that if there is permanent damage, that may never heal, but it won't get MORE damaged if you stay off of gluten (if gluten is the cause).

Hopefully this will be your answer and help your health, too.

[balor123]

Thanks for the replies! Very helpful. I've been trying it semi-seriously this week. How serious do you think it needs to be? Some products don't list Gluten Free but don't have anything with gluten in the ingredients. Others list Gluten Free but then say they're made in a factory that processes wheat. And some just say Gluten Free but with no mention of where it's made. Also, what do you when going out? Is eyeballing it good enough or do you just not eat out? You never know what goes into sauces, soups etc. Maybe you base it on symptoms but with neurological symptoms the time will just be too long for me too tell. Have appt with GI next Fri but sadly soonest I can get into Neurologist is Jan 24!

Also, I thought I'd read somewhere that Celiac is an autoimmune disease? I thought the pathology was that Gluten shares the same amino acid sequence as found in cells all over the body so by producing antibodies for it the body is actually attacking itself. My mother-in-law, a vet, mentioned something about a bad infection causing the intestines to become more permeable to macromolecules like gluten and that they can enter the blood stream where the body produces antibodies for it. Maybe that's why only 10% of Celiac develop neurological symptoms - it has to enter the blood stream. I visited India in 2007 and got real sick (fever, nausea, etc). I visited a hospital and they told me it wasn't Traveler's Sickness but never told me what it was and by the time I got back I was all better and my stool samples were negative.

[SGWhiskers]

Celiac antibodies absolutely can damage the brain and cause neurologic symptoms. Google gluten ataxia. Many of us here have neurologic symptoms. A positive result is a positive result. Biopsies can miss the damage, or damage can be mild.

Strict compliance with a gluten free diet can halt the progression of neuro symptoms. Some symptoms will likely improve on the gluten-free diet.

Unfortunately, if you have celiac disease, you need to be very strict with what you consume. I was in denial the first 3 months after my diagnosis believing there was no way "I" would need to be so strict on the gluten free diet. Only after I eliminated the cross contamination did I have consistent improvement.

Keep researching on this site. There are some very knowledgable and helpful people. Ideas of what to eat and how to get started on the diet are everywhere.

Congrats on the diagnosis. Your symptoms are much like mine were and I've seen life changing improvements. I too had no noticable GI symptoms. Consistency and strictness are the keys to successfully recovering.

[balor123]

Thanks for sharing your story - useful to know I'm not alone. I don't think it's psychosomatic, like my doctor wants me to believe. So what do you do at restaurants? I haven't come across one yet that claims to be Gluten free.