Signs And Symptoms

[tiredofdoctors]

Hi --my name is Lynne and I am fortunate that I have finally found a neurologist who is proactive with diagnosing my condition. I have read as much as I can about Celiac symptoms, but I have some pretty disturbing symptoms that haven't been mentioned.

Has anyone out there experienced a combination of extreme fatigue, blurred and double vision, ataxia, hyperreflexia, dysphagia, spasticity, spastic bladder and intention tremor? I have elevated Antigliadin antibodies, not extreme, but elevated. My physician has narrowed do down my diagnosis to either 1)MS or 2)Celiac disease. My brain MRI in January was normal, so I am actually hoping that it is Celiac disease. I currently walk with a walker, but my physician and physical therapist have said that I am unsafe even with that.

I am hoping that someone has experienced these symptoms, because a lifestyle change certainly beats a life of continuing medication and possible permanent damage. Any replies you can offer are greatly appreciated. Thank you.

[cdford]

I have had these symptoms for more than a decade now. Many docs wrote me off as "stressed and depressed" until the neurological symptoms of ataxia, spasticity, etc. set in. I was tested for MS every six months or so for five years because of the symptoms. The docs just shook their heads and couldn't figure it out. Then came the mild dementia, tremors, and looking as though I had had a stroke. I would up wheel-chair bound. Finally came the celiac disease/DH diagnosis. The docs just said "Duh, why didn't we think of this earlier!" I am now beginning to walk again with a walker some and am sitting at this computer able to function. While I am fully disabled and will probably never get back to work, I am getting gradually better and seeing the symptoms mediate over time. Press to get tested if you have not. You will be amazed after a year on the gluten-free diet how your symptoms begin to get better. I still have my ups and downs and if I get accidentally glutened I am back to square one, but now I know that it will get better as I get my gut back in line.

[tiredofdoctors]

Thank you so much for that information. I have so many severe neurological signs -- I'm a physical therapist, had my own practice, but had to close down. I only worked about two days (cumulative total) per week for months, but finally had to realize that I was worse off than my patients. I have been really frustrated about the non-chalant "come back in two months and let's see what happens" attitudes I've gotten in the past. In the meantime, the physician's life goes on, but mine has come to a screeching halt.

Have the doctors indicated to you whether the damage which your cerebellum sustained is permanent? That is actually my worst fear. I had shown signs of mild cerebellar degredation on my last MRI, but the neurologist said that it was actually 6 months behind the disease process. I am now going to be wheelchair bound. I would like to think that if I strictly adhere to the gluten-free diet that the symptoms will reverse, or the neurological pathways will re-route.

Are you on Social Security Disability, or have you attempted it? My physical therapist has recommended that I apply, because he said that because the weakness and spasticity is in my upper and lower extremities, I won't even be able to be a receptionist. I am really reluctant to initiate that if there's a chance that I'll be able to walk and work again.

Thanks again for responding. You made me feel much better.

[SabrinaLuvsGluten]

Hi! Just wanted to let you know that I was also having alot of neurological symptoms..I still havent been diagnosed with Celiac, but I have the symptoms, and plan to do more testing. I was seeing a neurologist before I got pregnant with my son, and he also almost diagnosed me with MS. Then, due to alot of different blood tests he ran, he said he wasnt convinced that is what it was. I even had a nerve conduction test done, and They had to keep turning up the shocker thing to get my foot to move. It was awful..I have also had visual disturbances. Also, my back constantly hurts, I have muscle spasms, and I have to urinate often..sometimes getting up twice a night. I also have had problems with numbness, and tingling in my hands, feet, and legs. So bad to the point where I went to the hospital over it. Sorry you are going through this..hope you start to feel better soon!

Sabrina

[tiredofdoctors]

Thanks! I'm sorry you're having so much trouble, as well. The majority of the studies which I have read indicate that the antigliadin antibody has a high false positive rate -- I believe there are antiendomysial and anti(something!) which are more expensive, but more accurate. I'm having another brain MRI this week -- if it's negative, I'm going to have the small intestine biopsy. In the meantime, my MD wanted me to start the gluten-free diet regardless. So far, I've found that it's a little more time consuming because you have to make most of your favorites from scratch, but still not too bad. I think right now, the only problem is that I have such fatigue and weakness (not to mention that I can't walk more than 2 steps without lurching) that cooking from scratch is a little difficult. Hope you can get some answers soon -- the not knowing part is kind of awful, isn't it?

[SabrinaLuvsGluten]

Yes, not knowing is definetly not fun. I am wondering why your doctor told you to go ahead and go gluten free before the testing. From what I understand, you shouldnt go gluten free until after your testing is finished because it can alter the test results...I would bring this up to him/her. Maybe someone else will chime in on this, but Im pretty sure that it would not be a good idea to go gluten free just yet if they havent done any testing.

Sabrina

[Emme999]

Lynne -

Do not go on the gluten-free diet until *after* you have the biopsy done!! It is far too risky that your results could be altered. Here is a (long) quote from the book Dangerous Grains by James Braly, M.D., and Ron Hoggan, M.A. (which is entirely about celiac / gluten sensitivity). I highly suggest that you find it at a library or go purchase it.

-----------

SMALL INTESTINAL BIOPSY

One individual contacted us reporting that she had been reassured that it takes four to six months for gluten-induced intestinal damage to heal, so a biopsy will identify celiac disease for up to six months after beginning a gluten-free diet. While it is true that it can take that long or longer for gluten-induced injuries to completely heal, it is a mistake to believe that a biopsy can produce an accurate diagnosis when consuming a gluten-free diet.

The biopsy is simply a sample of cells in the intestinal wall. These cells are completely replaced every few days. This rapid replacement lends itself to extremely rapid healing at the very region that is being examined for injuries that are signs of celiac disease. In many cases, the intestine will appear perfectly normal after just a week or two of strict compliance with a gluten-free diet.

(and then later in the book it talks about a "gluten challenge" prior to biopsy...)

A gluten challenge is the process of consuming multiple daily servings of gluten rich foods ... in order to gauge the body's reaction. Breakfast, for example, would likely include toast or cereal. Snacks might be cookies, crackers, muffins, or pastries. Lunch might contain sandwich bread or pizza and the evening meal might include pasta, piecrust, or Yorkshire pudding, along with a flour-thickened gravy.

The major pitfall of such a gluten challenge is that it is often undertaken by those who have been following a gluten-free diet as the result of their own research or on the advice of a health-care practitioner or friend. Whether motivated by the difficulty of the gluten-free diet, concerns for family members issues related to insurance coverage, income tax considerations, or other factors, such individuals later want laboratory or biopsy confirmation from a doctor for the diagnosis of celiac disease. But, if a patient has already begun a gluten-free diet and the intestinal wall has thus been given a chance to heal, it can take as much as five years or more after returning to eating gluten before the intestinal damage characteristic of celiac disease will show up on a biopsy.

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I recently had blood tests indicating celiac disease but am still awaiting my biopsy. Though it absolutely sucks to be filling my body with food that I know is causing problems for me, I am going to keep doing it - despite the awful reactions my body is having - because I *really* don't want to have that biopsy come back saying there's nothing wrong with me. Despite the fact that a "normal" biopsy is not always a true indicator of celiac disease, it is still considered the gold standard by many doctors. So, I'm eating gluten at almost every meal until I have the biopsy done.

Please be careful with yourself and don't jump into a gluten-free diet until *after* you have the results of your biopsy. There are other bloods tests that can/should be done prior to the biopsy though to give you an indication of whats going on in a really short time period (just a simple blood draw!). I had the tTG (tissue transglutaminase) antibody testing as one of a few blood tests that were performed. This particular test "usually identifies about 98% of those who have celiac disease, and it is a very specific test that can be used to rule out celiac disease in about 95 percent of cases. This test appears to be superior to endomysium antibody testing, not only because it is less costly but also because it is a little better at identifying celiac disease and because interpretive bias is reduced by the use of computer scanning." (Dangerous Grains, p. 72)

Other tests include IgG & IgA anti-gliadin antibodies. I actually had the IgG test when I hadn't been consuming grains for a while (super low carb diet) and the blood test only showed a *low* antibody response to gliadin, gluten, rye, spelt, wheat, and oats. So, please don't limit your diet prior to testing!!

There's another test called Endomysium Antibody testing - which I don't know much about (and am too tired to type out it's explanation from this book).

Point is - don't go gluten-free yet!

- Michelle

[cdford]

Hi, it's Donna again. My neurologist says that some of the nerves will regenerate and that we will have to wait a year or so to see just how much. The spasicity is much better and I am regaining some use of my left side. I rarely look as though I have had a stroke anymore. The fatigue is usually controllable as long as I stay home and behave myself. It is when I get out and try to do much that it kicks in again and I am out of commission for a few days. While I doubt I will ever work full time again, I hope that one day I can at least go back to teaching part time. That will be wonderful.

It takes being completely gluten free for an extended period of time to see real change. Any gluten sets you back again. I was doing a lot better when I got accidentally glutened and set back to the beginning almost. I hope to walk with a walker at least and be able to go and do some things with my kids again. If I can get that far, I will then set another goal to work toward. One step at a time.

I did apply for SSDI. It took over three years to get it through, but it has been a life saver since. At least it was back-dated so we received a large amount of money at one time and were able to build a house with wheelchair access. If you are going to consider it, go ahead. It is a monster process and takes forever. The worst thing that can happen is that you drop it if you get to go back to work. The longer you wait, the longer it will take you to begin getting the income if you are not able to go back to work. My best advice is to get a lawyer who deals with this regularly. They made my life and the process tolerable. I know a good one in Atlanta, GA but not elswhere. The SSDI programs they have now allow you to work small amounts without losing benefits once you get them. If you are working at all while applying, though, you can forget it from what I understand.

Feel free to message me anytime you need a little more info or just some encouragement.

[cdford]

I forgot to mention...when you get tested and are sure you are dealing with celiac disease, ask the neuro about using Gabitril for the spasicity. It is the only drug for that that is gluten-free and seems to work well. It will also help with the bladder spasms. We did not realize that some of the other meds had gluten when I first got diagnosed and later realized that they were contributing to the problem.

[jknnej]

hi guys,

I need to see a neurologist. I don't have the same symptoms as you, but I have tremors, a feeling of weakness and shakiness all over, nausea, and a bit of dizziness. They've tested my blood for thyroid, diabetes, cortisol levels, etc. All are normal.

I have no clue what this means but I am so tired of it!

[tiredofdoctors]

Thank you guys SO MUCH. I have gone completely gluten free -- with little or no decrease in my neurological symptoms. I will re-introduce gluten into my diet until I have the biopsy. That was fantastic advice -- thank you very much. For jknnej --have you had antibodies tested for your thyroid? I had a goiter from the age of 12 or 13, but no one tested for thyroid antibodies -- I ended up with severe problems, and my thyroid grew around the back of my trachea and under my sternum. If you have had any history of bowel trouble (I was diagnosed at 20 with ulcerative colitis and diagnosed at 16 with IBS), it would be worth going to someone who you know will listen to you. I drove 400 miles to see an immunologist who MISSED that I had elevated antigliadin antibodies. Good luck to you, keep trying, and if you have to dump your current MD for another, do it and don't feel bad about it! To the folks who answered with such great information, thank you again. Talk to you soon . . . Lynne