Non-celiac Gluten Intolerant

[princezz1983]

Hi All,

I'm new to the board, so here is my story...For the past 4.5 years, I've been suffering from medical problems that defied explanation.

It all started with the stomach attacks. Horrible abdominal pain and frequent vomiting, until I'm so weak I have trouble breathing. I get dizzy and weak, and my blood pressure plummets. I've been to the E.R. several times. I went to see a GI specialist who did every test in the book. The only thing wrong was very very mild gastritis, which he said could not be causing my severe symptoms.

In October of 2005, I began taking the combined birth control pill, went to bed, and woke up twitching and with tingling in my extremities and a feeling like insects were crawling over my skin.. A neurologist pronounced that my anxiety was causing the problems. Needless to say, I was in a bad emotional state, with so many things going wrong with my body all at once, and I was only 23! I started to take Lexapro and Klonopin, which HAVE NOT HELPED ME one bit. I have the highest highs and the lowest lows I've ever had in my life.

Always suspicious of food, I saw an allergist who completely dismissed me after performing RAST testing. I abandoned the idea. Finally, one ER doctor prescribed Protonix. It was the first six months I'd gone without vomiting in three years. I thought obviously I'd been having acute gastritis flare ups. And then, bam. Back in the ER vomiting 30 times in the space of 8 hours.

Let me also mention my pet yeast infection. Four times in six months.

My new GI doctor again ran lab tests and found a slightly high tTg test but no intestinal damage. Again suspicious, I got an Lame Advertisement test done instead. It showed high gluten intolerance, among other things (corn, peanut, etc). Curious, I went back to my old allergist and demanded to see my RAST results. Elevated wheat reactions, corn, peanut...Inspecting my own biopsy I found that the kind of gastritis I have is caused by lymphocytes, something that is supposed to be very prevalent in celiacs and known to regress on a gluten-free diet.

I've been gluten-free since December 5th now, and am praying for the best. I've read lots of accounts of people here who have eventually recovered from the anxiety and depression caused by gluten. I hope to be able to wean myself off my crazy meds soon and hopefully without too much issue (I've experienced withdrawal when I forgot to take a pill etc).

But my question is, what about the paresthesias. Can I recover from those having had them for two years now? Or is my nervous system permanently damaged?!

Thanks so much if you're still reading. I know this is super long.

[Fiddle-Faddle]

Welcome aboard, princezz! (Is that like "princess," or like "prince zz?")

I just looked up paresthesia and found this:

Without a proper supply of blood and nutrients, nerve cells can no longer adequately send signals to the brain. Because of this, paresthesia can also be a symptom of vitamin deficiency and malnutrition, as well as metabolic disorders like diabetes, hypothyroidism, and hypoparathyroidism.

That sure sounds like celiac/gluten intolerance, which causes leaky gut, which means you don't absorb nutrients. And celiac is definitely linked with diabetes and hypothyroidism (don't know about hypoparathyroidism, I never looked that one up).

I do think this could be reversible. We have a diabetic cat, who had such severe peripheral neuropathy, he couldn't feel his feet--so he walked on his "elbows". (Sorry, I don't know what they call that joint on a cat!). We gave him insulin with very little change in symptoms. We thenswitched him to a grain-free cat food, and his neuropathy is now TOTALLY gone.

So--how are you feeling two weeks into the gluten-free diet? Any improvement? And do you have any questions about any foods? It took most of us here a lot longer than 2 weeks to figure things out as much as you have--you sound like you are really on top of things (more than your doctors were, that's for sure!). It took me an embarrassingly long time to figure out that Rice Krispies and Corn Flakes had gluten.

[ravenwoodglass]

I am going to be short and simple, read my signature

I never thought that after 15 YEARS of daily D and nerve damage so bad that I could not walk without canes or walls, could not hold a cup (okay that was a combo of nerves and arthritis) my parethesias were constant and I had balance issues since childhood (gluten ataxia) I had also lost leg reflexes in childhood and dragged one leg. Eventually I would become incontinent from the nerve damage, both bladder and bowel. If I can heal you sure can.

I still have some slight problem with incontinence and I still can't tell you what finger you are touching or where my hands are without looking at them or moving them, (sounds strange I know) but I am now pretty much totally functional. I have been gluten free now for 5 years and although my progress has now slowed I still see evidence occasionally of repair. It can take awhile for nerves to grow back but it sounds like you have caught things quickly.

I should mention that my neuro celiac presentation was severe and took place over the course of 40 years. It had progressed to the point where I had lesions in the area of the brain that controls movement, too bad the neuros in the US were clueless that these were celiac lesions, I would have been diagnosed 5 years sooner after they looked at the MRI instead of having them still think I might have MS. Not everyone will form lesions, I am a bit of an extreme case, most times the damage is due simply to malabsorption and the inability of the body to utilize B12. Be sure you add a sublingual B12 that is for sure gluten free to your daily vitamins and be very careful of CC until you are healed. Go with as much unprocessed naturally gluten-free food as you can. Welcome to the boards you have found one of the best places for info and support.

[Offthegrid]

I don't know the exact answer to your question, but I will tell you I had the paresthesia symptoms for 6 months before diagnosis. Test after test couldn't find the answer. Finally, I switched doctors and mentioned that my aunt can't eat gluten and could I have that, too.

The symptoms greatly diminished when I went off gluten, but did not completely disappear until I eliminated casein (dairy).

If you have other allergies, too, as your tests might indicate, I would try abstaining from gluten and them, too. I would not be surprised if you see significant improvement in the first month and even more improvement within 3 months.

Just to warn you, I also had to eliminate soy and potatoes. And even still sometimes I get D even when I'm careful, because I'm finding it difficult to avoid so many foods at once (just as at first I found it difficult to avoid all gluten). Another warning, when you feel you are ready to go off those medications, take it nice and slow to avoid withdrawal.

Have hope. You now know you can't eat gluten, and you're on the road to feeling better.

[princezz1983]

Thanks all of you!

I'm not even sure if what I have is peripheral neuropathy. When it first started, the doctor ran nerve tests and said it wasn't. But it has been two years since then and I'm thinking I should have them re-run. Even so, I read that there could be nervous system involvement that has nothing to do with neuropathy or nutrient deficiency. I have no flattened villi but I don't know, maybe I could still have issues with absorbing and using these vitamins.

I will definitely look up a B supplement. I also read somewhere about Vitamin E?

I'm glad all of you have found so much relief. It's very encouraging. I thought that after two years of this I was doomed. They always say "if not caught early enough..." but they never say how early is early enough!

It also took me until I got back my Lame Advertisement results to realize Rice Krispies weren't OK =) In my two weeks completely gluten-free, the only thing I've really noticed is far, FAR better bowel habits. I had chronic constipation before and now I am free as a bird Also my stomach is less chronically upset. My main concern, however, is how my severe attacks will progress

I want to see how my anxiety would be progressing but have the feeling these stupid meds are holding me back. The Klonopin in particular produces tightness in my chest. I am on my way to buy a pill cutter right this instant because I am going to start tapering, regardless of what my psychiatrist says. If all my symptoms were psychiatric they would be gone by now because I have been on these medications for 6 months.

Anyway, Fiddle-Faddle, I have been neck-deep in my own research for as long as I can remember. In fact I've decided to go back to school to become a doctor, and it's all because of this. I think patients make far better doctors that actual doctors. So maybe there's a reason for everything that happens to us.

[Offthegrid]

I had my B levels checked, as well as was checked for diabetes (and had a sleep study, and a stress test, etc), and none was the cause behind my tingling/burning. I believe in my case it was a type of restless legs, although it typically affected my arms much more than my legs (but sometimes occurred simultaneously in the left leg and right arm, for example, making it impossible for me to sleep).

It also was severely exaccerbated by alcohol. I can now drink gluten-free alcohol without these syptoms, but they will come back if I have a drink several nights in a row. But, like I said, if I am strictly gluten- and casein-free, I don't have the tingling/numbness/burning any more, so that to me is the biggest incentive to be careful.

[ravenwoodglass]

I want to see how my anxiety would be progressing but have the feeling these stupid meds are holding me back. The Klonopin in particular produces tightness in my chest. I am on my way to buy a pill cutter right this instant because I am going to start tapering, regardless of what my psychiatrist says. If all my symptoms were psychiatric they would be gone by now because I have been on these medications for 6 months.

DO NOT cut those pills without checking with your pharmacist first. You could try going to your regular doctor and telling him you want to wean off of the drug. He may be able to prescribe either a lower dose, a different drug that will help you wean off, or give you a safe schedule to wean. Some drugs can just be stopped with no ill effects but many others can be dangerous if you go off them all at once.

I weaned off almost meds under my doctors supervision before I did my elimination diet, not easy since I was still so sick, but I never had to add back in anything other than baby asprin and pepto bismal.

[Fiddle-Faddle]

If all my symptoms were psychiatric they would be gone by now because I have been on these medications for 6 months.

As you probably know by now, the psych meds try to address the symptoms--but not the cause or causes.

I think you'll be a marvelous doctor! We need more doctors who have been through it all!

I agree with ravenwoodglass, though I haven't the experience that she has under her belt. But it does make sense--if you are taking several meds that have neuro effects (good or bad), you want to make sure that the doctor or at least the pharmacist knows exactly how you are weaning off. In fact, I think your doctor needs to know what a great dietary response you are having, because I think it's likely that you will now be absorbing much more of the meds than you were before.

If your doctor is an idiot and doesn't understand this, then you need a new doctor.

[holdthegluten]

Some advice on tapering off of benzodiazepines. 1st consult your doctor and ask his opinion on the best way to taper. 2nd, look into switching to valium as it has a longer life than the other ones and you can taper more slowly so your body doesnt miss the drug so much. (Google tapering off of benzodiazepines). Next, dont feel guilty or in a hurry to get off of them. 6 months is a realistic time frame, but dont feel bad if it takes longer. I took about 2 months to taper off of ativan, but i was only taking 0.5mg for a year once a day. Good luck and i am very glad to hear that you want to get off of the drugs. Once you have successfully removed the tranquilizers, you will feel much better and think more clearly. I tried to quit cold turkey and had terrible withdrawals. Please taper slowly and you wont feel the need to jump back on the meds full strength. God bless you and i know you are on your way to better health, both physical and mental.

[CarlaB]

Did you say you had an elevated TtG? That is a pretty good indication of celiac. What was your IgA? Your total IgA?

Candida problems can go along with heavy metal toxicity ... so can the other issues you describe.

Also, I would look into bacterial dysbiosis.

And, check out our Lyme Disease thread to see if anything there rings a bell.

With chronic, systemic illness, you really have to be your own doctor these days .... as doctors have become more specialized, it seems they look at the body with a narrower vision.

[Guest maybe I have celiac]

Thanks all of you!

I'm not even sure if what I have is peripheral neuropathy. When it first started, the doctor ran nerve tests and said it wasn't. But it has been two years since then and I'm thinking I should have them re-run. Even so, I read that there could be nervous system involvement that has nothing to do with neuropathy or nutrient deficiency. I have no flattened villi but I don't know, maybe I could still have issues with absorbing and using these vitamins.

I will definitely look up a B supplement. I also read somewhere about Vitamin E?

I'm glad all of you have found so much relief. It's very encouraging. I thought that after two years of this I was doomed. They always say "if not caught early enough..." but they never say how early is early enough!

It also took me until I got back my Lame Advertisement results to realize Rice Krispies weren't OK =) In my two weeks completely gluten-free, the only thing I've really noticed is far, FAR better bowel habits. I had chronic constipation before and now I am free as a bird Also my stomach is less chronically upset. My main concern, however, is how my severe attacks will progress

I want to see how my anxiety would be progressing but have the feeling these stupid meds are holding me back. The Klonopin in particular produces tightness in my chest. I am on my way to buy a pill cutter right this instant because I am going to start tapering, regardless of what my psychiatrist says. If all my symptoms were psychiatric they would be gone by now because I have been on these medications for 6 months.

Anyway, Fiddle-Faddle, I have been neck-deep in my own research for as long as I can remember. In fact I've decided to go back to school to become a doctor, and it's all because of this. I think patients make far better doctors that actual doctors. So maybe there's a reason for everything that happens to us.

try eliminating dairy products, the casein protein in dairy is very similar to the gluten protein. i think elimating gluten and casein has helped my depression and panic attacks. you are very smart to catch this at an early age

jim

[debmidge]

I am going to be short and simple, read my signature

I never thought that after 15 YEARS of daily D and nerve damage so bad that I could not walk without canes or walls, could not hold a cup (okay that was a combo of nerves and arthritis) my parethesias were constant and I had balance issues since childhood (gluten ataxia) I had also lost leg reflexes in childhood and dragged one leg. Eventually I would become incontinent from the nerve damage, both bladder and bowel. If I can heal you sure can.

I still have some slight problem with incontinence and I still can't tell you what finger you are touching or where my hands are without looking at them or moving them, (sounds strange I know) but I am now pretty much totally functional. I have been gluten free now for 5 years and although my progress has now slowed I still see evidence occasionally of repair. It can take awhile for nerves to grow back but it sounds like you have caught things quickly.

I should mention that my neuro celiac presentation was severe and took place over the course of 40 years. It had progressed to the point where I had lesions in the area of the brain that controls movement, too bad the neuros in the US were clueless that these were celiac lesions, I would have been diagnosed 5 years sooner after they looked at the MRI instead of having them still think I might have MS. Not everyone will form lesions, I am a bit of an extreme case, most times the damage is due simply to malabsorption and the inability of the body to utilize B12. Be sure you add a sublingual B12 that is for sure gluten free to your daily vitamins and be very careful of CC until you are healed. Go with as much unprocessed naturally gluten-free food as you can. Welcome to the boards you have found one of the best places for info and support.

Do you take the Sublingual Vit B 12 everyday?

[ravenwoodglass]

"Do you take the Sublingual Vit B 12 everyday?"

I think this was meant for me, and the answer is yes. I still take it daily and I push it like a dealer on every celiac family member, I check their supply regularly and refills just magically appear when and if needed.

[GlutenWrangler]

A change in bowel habits is a good indication that gluten was definitely a problem for you. Like most of us, you have encountered idiots doctors, and luckily have found your own way. Just keep doing what you're doing, helping yourself instead of depending on a doctor. But hopefully you'll find a doctor with an open mind.

I really think you should consult with your doctor about tapering off of Klonopin. In all seriousness, benzodiazepine withdrawal can be fatal. You really need to do it right, or you will suffer. Just take this whole thing one day at a time and make sure you have help in the process. Good luck,

-Brian

[BSinCO]

I am going to be short and simple, read my signature

I never thought that after 15 YEARS of daily D and nerve damage so bad that I could not walk without canes or walls, could not hold a cup (okay that was a combo of nerves and arthritis) my parethesias were constant and I had balance issues since childhood (gluten ataxia) I had also lost leg reflexes in childhood and dragged one leg. Eventually I would become incontinent from the nerve damage, both bladder and bowel. If I can heal you sure can.

I still have some slight problem with incontinence and I still can't tell you what finger you are touching or where my hands are without looking at them or moving them, (sounds strange I know) but I am now pretty much totally functional. I have been gluten free now for 5 years and although my progress has now slowed I still see evidence occasionally of repair. It can take awhile for nerves to grow back but it sounds like you have caught things quickly.

I should mention that my neuro celiac presentation was severe and took place over the course of 40 years. It had progressed to the point where I had lesions in the area of the brain that controls movement, too bad the neuros in the US were clueless that these were celiac lesions, I would have been diagnosed 5 years sooner after they looked at the MRI instead of having them still think I might have MS. Not everyone will form lesions, I am a bit of an extreme case, most times the damage is due simply to malabsorption and the inability of the body to utilize B12. Be sure you add a sublingual B12 that is for sure gluten free to your daily vitamins and be very careful of CC until you are healed. Go with as much unprocessed naturally gluten-free food as you can. Welcome to the boards you have found one of the best places for info and support.

celiac lesions,

I am really curious about this. I have never heard about celiac lesions. I recently had an MRI because of ongoing low back pain. What they found are two cysts on my lower spine. Is it possible that they are being caused by the Celiac?

BS

[ravenwoodglass]

celiac lesions,

I am really curious about this. I have never heard about celiac lesions. I recently had an MRI because of ongoing low back pain. What they found are two cysts on my lower spine. Is it possible that they are being caused by the Celiac?

BS

That I can't answer. The type of lesions they found on my MRI were in the brain. On the MRI film they look like bright white spots, almost like a light was on in the film. The actual name for them is UBO 'unidentified bright objects' they look similar to demylinating lesions that are found with MS but they are not surrounding the mylin sheath but in the brain itself. I know this wasn't very helpful. Did they say specifically what type of cysts they found? If you know the name and put the name and the word celiac in a search engine it may produce some info for you if they are related.

Will they be able to drain them to help with your pain? Celiac can cause all kinds of inflammation and problems throughout the body but I have never heard of a corelation with cysts. That of course does not mean it isn't celiac related, there is much left still to learn about all the effects.