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Testing Is Finished

tiredofdoctors

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tiredofdoctors Enthusiast
tiredofdoctors
Posted

Well, the testing is over -- blood tests negative, and the small intestinal villi look perfect. The GI surgeon said there is no way it's celiac. I was REALLY hoping that this was the answer. Now we still don't know what's destroying my brain and spinal cord. My neurologist wants me to go gluten free to stop the antigliadin antibodies (they're 1.1 units above normal), hoping that will at least slow the destruction. I'm tired, squeezed out like a tube of toothpaste and disappointed. Guess this means more doctors. I'm "doctored" out. If it weren't for the fact that whatever I have can eventually kill me, I'd stop. Good luck to all of you searching for an answer. Don't give up.

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skbird Contributor
skbird
Posted

You can have negative reactions to gluten and have them affect your neurological health and test negative for Celiac. *Some* gluten reactions are Celiac, but not all of them. Look up gluten ataxia.

It might be very wise for you to avoid gluten. Do your symptoms improve when you are not consuming gluten? I think your neurologist is on to something.

I have two gluten sensitive genes - one is an indicator for neurological symptoms and the other can indicate gastrointestinal. Neither is a Celiac gene though and I'm unlikely to show damage in my gut. But I can tell you that gluten wreaks havoc on my body and I am certain that if I were to continue to consume it I will go the way my relatives have - with dementia, Alzheimers, colon cancer, bad gallbladders, ulcers, unsteady gait, etc etc etc.

Just because it's not Celiac doesn't mean gluten isn't bad for you (how's that for a double negative?)

Take care and keep checking in...

Stephanie

KaitiUSA Enthusiast
KaitiUSA
Posted

You could have a sensitivity to gluten but just not have celiac..yet. Maybe a trial period on the gluten-free diet to see if there are any changes would help.

tiredofdoctors Enthusiast
tiredofdoctors
Posted
  • Author

Thanks for the advice -- talked to my neuro -- he still wants me to go gluten-free, so you're right on the money. There are worse things that being gluten-free: namely, not being able to walk, talk, or move. I hope that it makes a difference. At minimum, I hope it keeps the destruction from continuing. I'm already in a wheelchair. I'm still going to be searching the message board for information -- you guys are a wealth of knowledge. Thank you for your help and your encouragement. I appreciate it.

gf4life Enthusiast
gf4life
Posted

I know that you are tired of the doctors and testing and all the poking and proding that they do, but I highly recommend the gene test from Enterolab. They check for the non-Celiac gluten intolerance genes (that Stephanie was mentioning above) as well as the Celiac genes, and it only involves a cheek swab. They will mail you the kit, you follow the instructions and mail it back. Easy as that. It will cost about $100, but it is nice to know if you have the genetic background. It helped me to confirm that I did need the diet despite my negative test results.

Another little piece of information is that you can be gluten intolerant despite the negative test results. They only check for the part of the disease that damages the intestines, but lately they are starting to recognise that for some the gluten damages the brain and their neurological functions become impaired. There have been a few articles on it lately. You are fortunate to have a neurologist who knows what he is talking about. Please listen to him.

My son also has DQ1 & 3 and is not conscidered "Celiac", but he is certainly gluten intolerant. His neurologist also supports him staying on the diet, as does his rheumotologist/immunologist, his ENT, and his GI doctors! We are fortunate that the doctors we have want my son healthy regardless of what the tests say. His health improves on the gluten-free diet and that is reason to stay on it.

God bless,

Mariann

tiredofdoctors Enthusiast
tiredofdoctors
Posted
  • Author

Marianne, thank you VERY much. As one of my topics stated, a second eye doctor was the one who was critical in facilitating the blood tests and the scope. He also said that I needed to have much more blood testing. I told him that I had had 37 immunological tests. His response was -- not that -- I think you need genetic testing. I'm oddly comforted by that, particularly given your answer. My biggest concern at this time is this -- by radiograph, you can certainly see breakdown of the cerebellum, and on several different views, you can see a lesion on the cervical spine (so we know it isn't artifact) -- my medical background lends me to believe that this damage is permanent, and perhaps my brain can re-route somewhat, but that to think that I will ever walk at least without a walker is just not realistic. Any thoughts or experience? Thank you again for your reply. God Bless you, as well. Lynne

gf4life Enthusiast
gf4life
Posted

Lynne,

All I can say is that anything is possible! You should try to be gluten-free as soon as possible (if you aren't already) and stick to it. Our bodies are amazing and have the power to heal themselves quite easily. You may never heal 100%, but maybe you CAN get rid of the walker! Just try to stay positive. I don't have any personal experience with that aspect of celiac disease, but you never can tell what can happen...

God bless you. I will keep you in my prayers.

Mariann

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baggotlane Rookie
baggotlane
Posted

You may indeed not be celiac. There are other ways that similar (intestinal and neural) symptoms can occur. You mentioned the vertebra. I'd suggest you look there. Having problems in the upper vertebra (cervical section) is well-known to be a cause of pain in the arms, shoulders adnd hands. But it also affects the neural system in the stomach, leading to similar problems that celiacs suffer from.

I'd suggest you see a neurologist and have him talk too your gastroenterologist. They may suggest an MRI for the cervical area.

There is a much talk in these posts by people who make the assuption that everyone here is celiac. Most are, but that does not mean everyone. Before drawing false conclusions about what you thought was a celiac condition and getting upset because the tests did not support that hypthesis I'd earnestly suggest you have your doctor look for causes that are not celiac related.

Good luck, and let us know.

Andrew

Guest nini
Guest nini
Posted

I still believe that Wheat/Gluten is toxic for just about EVERYONE and is partially to blame for so many health conditions.

I hope you find the answers you seek, and get some relief soon.

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