Gluten Challenge Re:neurological Symptoms

[jaime1103]

Hi there,

A little background.... one year ago I had some digestive issues so I had a colonoscopy and endoscopy.... during endoscopy, dr noted my small bowel was scalloped and performed biposy.... came back non-specific and so I went on with life. Then in November of 2007 (3 months ago), I started to feel really sick. I was having severe neurological symptoms (muscle twitches all over, buring and tingling in my gums, lips, face, head, losing sensation in my fingers, hands cramps, foot and leg cramps, dizziness, light headed), I was really scared and thought I had some serious illness. My dr referred me to a neurologist, they started the testing, MRI, EEG, were going to do the EMG (and I chickened out), then my friend told me her cousin had Celiac and had all of the same symptoms I had, so I called my dr, had the bloodwork done and it all came out positive: IgA - 10, IgG - 19 and the Endo Ant IgA Positive. My PCP felt that the these results, coupled with my scalloped colon, the non-specific biopsy, my extremely low Vitamin D and calcium levels were enough to give him 100% confidence that I had celiac. So.... on 12/19/07 I started going gluten free and have been for 2.5 months.

Well, all of the neurological sympoms subsided, with the exceptions of the morning hand cramp/tightness, so I felt good. Well, I had my follow up with my PCP last week and he felt I should have a follow up with my GI dr. So yesterday, went to GI Dr and he wants to re-do all of the blood work and endoscopy since PCP did not have the ttg done.... and felt that while my intestines were scalloped, the biopsy read non-specific, not Positive (which PCP told me it as as good as positive). So, here I am, on a 4 week gluten binge to see what happens. I started yesterday morning and by this morning, my muscles were all twitching when I woke up and I feel dizzy. Is this really possible?

Does this seem crazy that the GI dr wants to do this all over or is he right that the the ttg needs to be dones, as well as another biopsy?

I certaintly want to know for sure, since it is a hard diet and if I truly don' have it, by all means I want to know. I also have a 3 and 1 year old, so I am really doing a lot of this, esp. the challenge, so I can know for them.

Also, I have only been gluten-free for a little over 2 months, so is 4 weeks of gluten enough to get any good results??

Thank you if you made it this far... I am really clueless!

Jaime

[dhd2000]

Hi Jaime,

I can sympathize with you quite a bit. I was low gluten for about 6 months and then did a challenge to get my firm diagnosis. I was "lucky" to have the associated skin condition, DH, and the skin biopsy was what confirmed it for me, my blood results were inconclusive. I had to do my challenge for two weeks before my skin broke out enough for the test. I was miserable for those two weeks and I have three kids, so that was difficult. If you trust your doctor, you can certainly try as hard as you can to complete the challenge. But having the neuro symptoms while caring for children might get too scary. You could do your best and if you get to a point that you can't continue, call your doctor and explain your reasoning (safety of the children) and request the gene test instead.

The most important thing is how you feel about your diagnosis. If you are significantly improved on the diet and know that gluten is out for you regardless, you don't have to do further testing. As for your children, you'll have to watch them closely and be willing to take them for testing if necessary, either way.

Good luck to you. I hope you feel better soon.

Dee in NC

[ravenwoodglass]

Hi there,

A little background.... one year ago I had some digestive issues so I had a colonoscopy and endoscopy.... during endoscopy, dr noted my small bowel was scalloped and performed biposy.... came back non-specific and so I went on with life. Then in November of 2007 (3 months ago), I started to feel really sick. I was having severe neurological symptoms (muscle twitches all over, buring and tingling in my gums, lips, face, head, losing sensation in my fingers, hands cramps, foot and leg cramps, dizziness, light headed), I was really scared and thought I had some serious illness. My dr referred me to a neurologist, they started the testing, MRI, EEG, were going to do the EMG (and I chickened out), then my friend told me her cousin had Celiac and had all of the same symptoms I had, so I called my dr, had the bloodwork done and it all came out positive: IgA - 10, IgG - 19 and the Endo Ant IgA Positive. My PCP felt that the these results, coupled with my scalloped colon, the non-specific biopsy, my extremely low Vitamin D and calcium levels were enough to give him 100% confidence that I had celiac. So.... on 12/19/07 I started going gluten free and have been for 2.5 months.

Well, all of the neurological sympoms subsided, with the exceptions of the morning hand cramp/tightness, so I felt good. Well, I had my follow up with my PCP last week and he felt I should have a follow up with my GI dr. So yesterday, went to GI Dr and he wants to re-do all of the blood work and endoscopy since PCP did not have the ttg done.... and felt that while my intestines were scalloped, the biopsy read non-specific, not Positive (which PCP told me it as as good as positive). So, here I am, on a 4 week gluten binge to see what happens. I started yesterday morning and by this morning, my muscles were all twitching when I woke up and I feel dizzy. Is this really possible?

Does this seem crazy that the GI dr wants to do this all over or is he right that the the ttg needs to be dones, as well as another biopsy?

I certaintly want to know for sure, since it is a hard diet and if I truly don' have it, by all means I want to know. I also have a 3 and 1 year old, so I am really doing a lot of this, esp. the challenge, so I can know for them.

Also, I have only been gluten-free for a little over 2 months, so is 4 weeks of gluten enough to get any good results??

Thank you if you made it this far... I am really clueless!

Jaime

My gosh what is wrong with that doctor!!!!!!!! Please go with what your GPC has said, the scalloping is indicative of celaic as are the neuro issues. You are now doing a gluten challenge after a period in the gluten free diet in which you saw a resolution of your problems. Those problems are now coming back. You are celiac with neuro impact but your GI wants to see your villi totally destroyed before he will diagnose you 'officially'. You have had positive bloods and dietary response, that is really all you need.

[flourgirl]

Jaime,

I agree that there is something wrong with your Dr. If you have no other alternative, you need to educate yourself and your doctor. I have a copy of "Celiac Disease-A Hidden Epidemic" by Peter H.R. Greene, MD, who is the director of the Celiac Disease Ctr at Comumbia U. I take my book with me to my Dr. visits, with the appropriate pages earmarked and underlines. He discusses many of the symptoms, food issues, nutrient issues and malabsorption, when testing is appropriate, and pretty much what to expect. For any one of us the healing process is different, as our symptoms are different, but this book has some great guidelines. There are other books out there, too. I like Living Gluten Free for Dummies", too. Both of these books can be bought here, or in a bookstore.

If your Dr. can not abide you bringing information to share, and won't listen to you, or allow you any control over your care and healing, then you really DO need to find someone else.

Good luck, we're all pulling for you. Oh, by the way......there is nothing in this world that could tempt me to ever be so sick again. Doctors are supposed to heal, and at the very least cause no harm, and going back into the damage cycle is truly harmful.

[Takala]

This is a really good topic you have started.

Let me preface by saying I also get neurological problems in addition to arthritis, crappy spinal density, asthma, kidney, digestive and mental fog problems from gluten... but since I don't react quickly or severely when I eat small amounts of it, and I have the other spinal thing we could blame some of the neuro stuff on, I was never formally diagnosed in spite of over 30 years of symptoms and health insurance and doctor's tests.

Once I changed my diet, with positive results, (because of a single sentence written on an internet chat board which had nothing to do with medical topics, btw, but made me start researching ) I still have had doctors blow me off to the point where I do not trust their motivations nor their integrity with wholeheartedness anymore when it comes to "ordering more tests to see what is going on."

I know what's "going on" with me in terms of the prefered menu department. Whether or not the medical profession agrees with my eating choices, that's just too bad on their part.

Now let's look at you. You've been run thru the gauntlet, and you've already passed:

blood tests showing some degree of gluten intolerance

funny looking interior digestive tract

matching neuro symptoms which will send most docs running trying to prove you have MS

low blood calcium

positive dietary response which got rid of the neuro symptoms after only 2 months

I don't know what more anyone could want out of a diagnostic experience other than a parent and siblings showing extreme signs of gluten intolerance, grandparents that either had autoimmune disease and/or croaked at early ages from wierd intestinal cancers, and you also possessing some of the DQ genes that go along with Celiac or gluten intolerance, preferably lots of them so you're a walking advertisement with a blinking light on your forehead.

So, the regular doc could have just run a blood test on you to see if you had any antibodies still from accidental cross contamination and hidden gluten in things like shampoo, but, oh, no, wait... his good buddy GI doc needed some patients. SO, off you go to GI Doc, who sees you have health insurance that will pay for all these other tests early in the year.... or rather, you will pay the deductable, so off you go on round two to the Island of "Lost."

Doctors love refering patients back and forth all the time like ping pong balls as long as they stay on the home table, so to speak.

Doctors in the United States are losing insured patients right and left as the economy worsens and the health insurance companies now are tightening the screws further and further, so when they find a person with insurance they think they can run up, they will. They do it because people are trained culturally not to question their authority, and they think they need the money. They throw 5 patients into the insurance box and see who they can get reimbursements on to pay for the practice, because the insurance companies are now playing this game called "deny the first claim automatically but randomly."

You could call the office back AND send both these doctors a notice that your neuro symptoms have already resumed, and ask what their response is to this. If they think it's still a good idea to proceed, you pretty much have your answer and you need to find another doctor or at least make it clear to the PCP you won't tolerate this sort of nonsense anymore. Because they're making you sick just to run a test that won't prove anything. Running after toddlers requires coordination. (so does running after farm animals... ) I've had the neuro symtoms with the coordination and vision problems, it is no fun.

You may want to try supplementing with a gluten free calcium/vitaminD/magnesium mineral supplement, a multivitamin and B vitamin supplement, and try doing some arm strengthening exercises to help with the hand cramp. The stronger and more flexible I can get my arms, the better my hands work. It took me much longer than 2 months to recover from the balance issues, but I still continue to improve slowly nearly 5 years later after the diet change, as I was probably much older than you are now when that got very bad.

[Nancym]

Doesn't the return of your symptoms kind of confirm that you need to stay on the diet? I mean, what if the results come back negative, are you really going to resume eating gluten and just tolerate the symptoms? I'm not following your logic.

[YoloGx]

This is a really good topic you have started.

Let me preface by saying I also get neurological problems in addition to arthritis, crappy spinal density, asthma, kidney, digestive and mental fog problems from gluten... but since I don't react quickly or severely when I eat small amounts of it, and I have the other spinal thing we could blame some of the neuro stuff on, I was never formally diagnosed in spite of over 30 years of symptoms and health insurance and doctor's tests.

Once I changed my diet, with positive results, (because of a single sentence written on an internet chat board which had nothing to do with medical topics, btw, but made me start researching ) I still have had doctors blow me off to the point where I do not trust their motivations nor their integrity with wholeheartedness anymore when it comes to "ordering more tests to see what is going on."

I know what's "going on" with me in terms of the prefered menu department. Whether or not the medical profession agrees with my eating choices, that's just too bad on their part.

Now let's look at you. You've been run thru the gauntlet, and you've already passed:

blood tests showing some degree of gluten intolerance

funny looking interior digestive tract

matching neuro symptoms which will send most docs running trying to prove you have MS

low blood calcium

positive dietary response which got rid of the neuro symptoms after only 2 months

I don't know what more anyone could want out of a diagnostic experience other than a parent and siblings showing extreme signs of gluten intolerance, grandparents that either had autoimmune disease and/or croaked at early ages from wierd intestinal cancers, and you also possessing some of the DQ genes that go along with Celiac or gluten intolerance, preferably lots of them so you're a walking advertisement with a blinking light on your forehead.

So, the regular doc could have just run a blood test on you to see if you had any antibodies still from accidental cross contamination and hidden gluten in things like shampoo, but, oh, no, wait... his good buddy GI doc needed some patients. SO, off you go to GI Doc, who sees you have health insurance that will pay for all these other tests early in the year.... or rather, you will pay the deductable, so off you go on round two to the Island of "Lost."

Doctors love refering patients back and forth all the time like ping pong balls as long as they stay on the home table, so to speak.

Doctors in the United States are losing insured patients right and left as the economy worsens and the health insurance companies now are tightening the screws further and further, so when they find a person with insurance they think they can run up, they will. They do it because people are trained culturally not to question their authority, and they think they need the money. They throw 5 patients into the insurance box and see who they can get reimbursements on to pay for the practice, because the insurance companies are now playing this game called "deny the first claim automatically but randomly."

You could call the office back AND send both these doctors a notice that your neuro symptoms have already resumed, and ask what their response is to this. If they think it's still a good idea to proceed, you pretty much have your answer and you need to find another doctor or at least make it clear to the PCP you won't tolerate this sort of nonsense anymore. Because they're making you sick just to run a test that won't prove anything. Running after toddlers requires coordination. (so does running after farm animals... ) I've had the neuro symtoms with the coordination and vision problems, it is no fun.

You may want to try supplementing with a gluten free calcium/vitaminD/magnesium mineral supplement, a multivitamin and B vitamin supplement, and try doing some arm strengthening exercises to help with the hand cramp. The stronger and more flexible I can get my arms, the better my hands work. It took me much longer than 2 months to recover from the balance issues, but I still continue to improve slowly nearly 5 years later after the diet change, as I was probably much older than you are now when that got very bad.

Thank you Takala! Well said!

I too have neuro sypmtoms and more than my fill of doctors who just don't get it. It would be nice to find someone who did get it but so far no luck. Basically I decided to save my money. Now I am healthier overall than I ever have been and look ten years younger than my actual age. Whereas previously the sheath on my nerves was down 50% etc. etc. with other symptoms ad nauseum.

I was after all diagnosed with this at age 4 months from failure to thrive and pneumonia after being introduced to grains and then it was summarily assumed I had grown out of it at age 4 years despite a life spent dealing with health struggles and the assumption it was all my fault due to being "too sensitive"! Fortunately my grandmother clued me in when I was continuing to have major kidney deterioration as a young adult that maybe food allergies were involved.

I am a strong believer in the b vitamins, d (esp. cod liver oil) , minerals, ground flax seed and the rest as well as the healing potential of herbs and a basic paleo diet--which very few docs even begin to acknowledge since there is no money in it as well as their thinking its all quackery from what they were taught in med school.

My response to that now is to write a book on the subject. Will keep you all posted when I finish.

Sorry to have diverged, but this kind of thing gets my dander up.

[gfpaperdoll]

Takala, You Go Girl!!!!!!!!!!!!!!!!! I could not have said it better myself.

yep, your docs are giving you the "treatment" all right.

Just stop & think, you are gluten free & you are getting better. What would you do if you ate gluten for 3 weeks & you were nearly bedridden you were so ill, & your biopsy was negative? Are you going to eat some more gluten? I think the answer is no. What if your biopsy is positive? What are you going to do? Not eat any more gluten. So you know the only thing that you are going to accomplish is that you are going to fatten the GI's wallet & make yourself so sick that they might have to refer you to another specialist.

I say start taking some B12 & stay out of the doctors office. Except maybe go in & have some blood work done & check all your vitamin & mineral levels & I mean all of them - you will have to ask for the tests specifically because they do not like to run them. Oh, & be sure to have them mail you a hard copy - they do not like to do that either

If you want to know which genes you have - & I say with neurological problems you got to have at least one DQ1 gene if not two, test thru Enterolab.com...

[jaime1103]

Thank you everyone for taking the time to reply. This is all so new to me and I really have a hard tim trying to figure out the dr's intentions. My PCP told me "I have 110% confidence" that you have Celiac", yet I didn't know if he really know alot about it. Then, to go to the GI dr, who seemed to really be able to talk about it, questions the diagnosis. it had me thoroughly confused. I was kind of disturned though, b/c the GI dr really dismissed the neuro symptoms I was having. Every site I go to states the neuro symptoms in the celiac site and he was so quick to say that it was NOT indicative.... annoying to say the least.

I guess I really need to find a new dr who is more in sync with my issues and my illness. I am so tired of doctors at this point! Between 2 little kids, the doctors and the dentist (my new BFF), it is so overwhelming.

Is the ttg really an important diagnostic test?