15 replies to this topic

[John6307]

I�m new to the forum. What brought me to this was over 11 years with a slowly progressive sensory peripheral neuropathy that at least 12 neurologists, most from a major teaching hospital, could not figure out. Finally, at my personal physician�s suggestion, I went to the Mayo Clinic. The neurologist there seem unsure based on looking over my medical records and the clinical exam. He drew blood and ran the usual nerve conduction and EMG tests. A few weeks later I received his report and all test result, which he also forwarded to my doctor.

On the next to the last line he mentioned doing additional lab work to check endomysial and gliadin antibodies to check for abnormalities associated with celiac disease. I called my doctor and requested that blood work to be done immediately because I really didn�t want to do the other things that were recommended. None of the other doctors, including myself, had ever considered a gastrointestinal disease could be related to a neurological one. I was never asked about any of those symptoms and didn�t offer them because they didn�t seem �medically relevant.�

My test came back as a �weak positive� and my doctor said to start a gluten free diet. He did not want to follow up with a biopsy. I have been working on the gluten free diet for about a month or so and now also eliminating lactose. Some of the gastrointestinal symptoms have shown �some� improvement, but not completely gone. The neurological symptoms began first and I can�t really remember exactly when the gastrointestinal problems began. It�s hard to get a full family history, but in putting a few pieces of the puzzle together with one of my sisters, there is evidence this could be genetic from my father�s side of the family.

My wife has been very supportive. The house has been cleared of anything containing gluten, but it is still stressful due to the drastic change in diet. She even made me some pretty good biscuits that were gluten free. I am sure many of you on here have gone through this maybe even some with neurological problems as well. This started in my 30�s and fortunately I was able to retire from law enforcement with a full retirement at 46. I don�t think I could have worked in that field much longer with the problem I was having with my hands.

Grocery shopping time has tripled and is more stressful. I�m looking at ever source I can find including this forum.

[adab8ca]

Welcome! Not necessarily a club you wanted to join, but it is better than the alternatives! Firstly, I am so sorry that you suffered so long. How awful and scary. I started getting the neuropathy in Feb 2010 but it got REALLY BAD REALLY FAST and by July I was sure that I was going to end up in a wheelchair. In addition, crippling anxiety and depression. A neurologist that I saw ran a ton of autoimmune tests to rule them out and they came back screaming high for Celiac antibodies and here I am!
Regarding food shopping, the one piece of advice that I wish that people gave me is don't try to replace the gluten filled foods with alternatives. I find most don't taste very good. Try to stick to whole foods, meat (if you eat it), fruit, veggies...Things that have one ingredient are not going to have gluten in them. If the list of ingredients is too long, put it down, you probably don't need it anyway. It WILL get easier and then you can start to explore the options available to you.
The other piece of advice is to be kind to yourself. There will be good days and bad days. You have been ill for a long time, it will take time to get better.
Your wife sounds great, very supportive, she will be happy to get her husband back. I know my husband is so happy to have his wife back!
Read away, ask away, no questions are dumb and hopefully you are on the right track to good health!!!

[Marilyn R]

I�m new to the forum. What brought me to this was over 11 years with a slowly progressive sensory peripheral neuropathy that at least 12 neurologists, most from a major teaching hospital, could not figure out. Finally, at my personal physician�s suggestion, I went to the Mayo Clinic. The neurologist there seem unsure based on looking over my medical records and the clinical exam. He drew blood and ran the usual nerve conduction and EMG tests. A few weeks later I received his report and all test result, which he also forwarded to my doctor.

On the next to the last line he mentioned doing additional lab work to check endomysial and gliadin antibodies to check for abnormalities associated with celiac disease. I called my doctor and requested that blood work to be done immediately because I really didn�t want to do the other things that were recommended. None of the other doctors, including myself, had ever considered a gastrointestinal disease could be related to a neurological one. I was never asked about any of those symptoms and didn�t offer them because they didn�t seem �medically relevant.�

My test came back as a �weak positive� and my doctor said to start a gluten free diet. He did not want to follow up with a biopsy. I have been working on the gluten free diet for about a month or so and now also eliminating lactose. Some of the gastrointestinal symptoms have shown �some� improvement, but not completely gone. The neurological symptoms began first and I can�t really remember exactly when the gastrointestinal problems began. It�s hard to get a full family history, but in putting a few pieces of the puzzle together with one of my sisters, there is evidence this could be genetic from my father�s side of the family.

My wife has been very supportive. The house has been cleared of anything containing gluten, but it is still stressful due to the drastic change in diet. She even made me some pretty good biscuits that were gluten free. I am sure many of you on here have gone through this maybe even some with neurological problems as well. This started in my 30�s and fortunately I was able to retire from law enforcement with a full retirement at 46. I don�t think I could have worked in that field much longer with the problem I was having with my hands.

Grocery shopping time has tripled and is more stressful. I�m looking at ever source I can find including this forum.

Hi John, welcome to the forum. I experienced those tests from the neurologists..never conduction and etc. Ouch! It's too bad that most neurologists don't think about celiac disease, and sadly, most dr's dont.

We have a similar situation. My first symptoms were neuropathy, insomnia ... it took two years for me to hit rock bottom with gastro symptoms. My mother had gait ataxia and was dx with celiac disease, I haven't been diagnosed but follow the diet carefully.

From what I've read, it may take you longer to heal and you may be very sensitive to gluten cross-contamination. Ravenwood is someone who's dealt with these issues for quite awhile, and is a wealth of information.

Grocery shopping eventually gets easier, once you get the hang of it. If you don't like to cook, it's time to learn to love cooking!

[rosetapper23]

In the beginning, it can seem overwhelming....but, really, all you need to do is eat natural foods. Most of us have become so accustomed to eating processed foods, we've forgotten what real food is! If you buy natural foods (e.g., fruits, vegetables, meats, nuts, beans, rice, eggs, etc.), you'll be just fine. If you feel that you need a gluten-free substitute for bread and pasta, some excellent brands are Against the Grain, Udi's, and Rudi's for bread....and Tinkiyada and Glutino for pasta. Gluten-free crackers that can be found in the regular cracker aisle that are quite tasty are made by Crunchmaster, and some "regular" cereals that are gluten free include Cocoa Pebbles, Fruit Pebbles, gluten-free Chex varieties, and gluten-free Rice Krispies. You can substitute gluten-free Tamari Sauce for soy sauce, and there are a number of gluten-free beers on the market.

If you feel you MUST have some "regular" foods, here's a list of grocery products that you can find anywhere that are gluten free:

http://homepage.mac..../GFfoodlist.pdf

Hope this helps lower your stress level...and welcome to the Forum!

[John6307]

Thank you for the welcome and support. I really didn�t know what I was going to post for awhile. I just stared at the screen. My mind is full of so many questions many of which I know there is no answer. I have researched this topic extensively and still do not know everything I want to know. But, I am sure it will get better with time in dealing with the shock transition. It does help knowing there are others that deal with the same thing.

Thank you very much!

[John6307]

Thank you for your response Marilyn. You know I think one thing that still frustrates me is that none of these neurologists ever asked about other symptoms until the doctor from the Mayo Clinic. It seemed like an afterthought in his notes, but at least he thought outside the box. I have read some of the same things concerning healing. Peripheral nerves can grow back, but they do it very slowly and I know I�m not going to be playing the guitar again next week and there is no guarantee of a full recovery either. So, I hope and pray for the best.

Thank you for the advice and encouragement.

[John6307]

I appreciate the link to the mainstream products. I used to love Wheat Thins and hummus and I soon discovered the Blue Diamond brand Nut Thins. That was my snack weakness for the most part. I am getting more used to the whole foods thing. It�s better for me anyway. I think there�s a psychological barrier of the �can�t have� to get through and once I�m over that I�m sure things will get easier.

Thank you again.

[kareng]

If you feel you MUST have some "regular" foods, here's a list of grocery products that you can find anywhere that are gluten free:

http://homepage.mac.com/sholland/celiac/GFfoodlist.pdf

Hope this helps lower your stress level...and welcome to the Forum!

Please note:

This product guide appears to be 6 years old. Products change constantly. While some may still be gluten-free many ingredients and manufacturing practices have changed since 2005. For example, Chex gluten-free cereals would not be listed on something from that time.

Reading ingredients is more helpful. In the US and Canada, wheat will clearly be listed. Many big companies like Con-Agra and Kraft will be sure to include if an ingredient is derived from any gluten source including barley.

[AVR1962]

Welcome! Like you, my symptoms also were nuero and I was sent thru a battery of tests. At first it looked like something else and thought I was heading to surgery but then goping gluten-free changed everything. Good thing when I reflect is not only were they able to eliminate but in the process of testing they were able to link all the tests together and after 7 months I had a diagnosis, just 2 weeks ago. Anytime with neuro damage is a long time so I am glad they found the problem so you can get the proper care.

I am 48, teach music, and like you feeling unable to work with your hands much longer, my eyes could not keep up with the music, they were jumping. I was having trouble comprehending the theory I had taught for years. I had to let a couple of my advanced students go before I realized what was happening. It is debilitating.

The longer you work with the diet, the easier it becomes. I had to do ALOT of healing and am still on a low acidic diet as I had so much GERD and the diet is supposed to help me recover my bone loss. It's helped alot!

Probabaly the biggest thing I have had to learn is asking questions at a restaurant. I don't live in the US....visited this past summer and found it wonderful to find so many restaurants with gluten-free/dairy-free menus!!!! I have not found it as easy in Germany but I have learned to ask. Another thing is the kitchen iself. Neither husband or teenager in house are gluten-free so I am sharing with gluten eaters which means everyone has to learn how to use products like jelly, mayo......do dipping after the knife has hit the bread.....slicing the cheese on a plate with clean hands so it doesn't pick up crumbs. That is how careful you have to be. Toss the toaster if you use it. Pitch the wooden spoons and the strainer. Check your cooking spray, some have wheat.

What symptoms are you still dealing with?

You'll find great help here as you journey thru this.

[John6307]

Please note:

This product guide appears to be 6 years old. Products change constantly. While some may still be gluten-free many ingredients and manufacturing practices have changed since 2005. For example, Chex gluten-free cereals would not be listed on something from that time.

Reading ingredients is more helpful. In the US and Canada, wheat will clearly be listed. Many big companies like Con-Agra and Kraft will be sure to include if an ingredient is derived from any gluten source including barley.

Oh yes, reading labels is what has caused the length of time to buy groceries to increase so much. Even then sometimes I hit the internet with my iPhone to double check some things and when we cannot get a clear answer we leave it. I understand how ingredients change so we try to be updated whenever possible. I have downloaded lists from local grocery stores such as Publix and Winn Dixie that list all of their brands that are gluten-free, which is helpful and I have the latest copy of the Gluten-Free Shopping Guide and that has also come in handy.

[John6307]

Welcome! Like you, my symptoms also were nuero and I was sent thru a battery of tests. At first it looked like something else and thought I was heading to surgery but then goping gluten-free changed everything. Good thing when I reflect is not only were they able to eliminate but in the process of testing they were able to link all the tests together and after 7 months I had a diagnosis, just 2 weeks ago. Anytime with neuro damage is a long time so I am glad they found the problem so you can get the proper care.

I am 48, teach music, and like you feeling unable to work with your hands much longer, my eyes could not keep up with the music, they were jumping. I was having trouble comprehending the theory I had taught for years. I had to let a couple of my advanced students go before I realized what was happening. It is debilitating.

The longer you work with the diet, the easier it becomes. I had to do ALOT of healing and am still on a low acidic diet as I had so much GERD and the diet is supposed to help me recover my bone loss. It's helped alot!

Probabaly the biggest thing I have had to learn is asking questions at a restaurant. I don't live in the US....visited this past summer and found it wonderful to find so many restaurants with gluten-free/dairy-free menus!!!! I have not found it as easy in Germany but I have learned to ask. Another thing is the kitchen iself. Neither husband or teenager in house are gluten-free so I am sharing with gluten eaters which means everyone has to learn how to use products like jelly, mayo......do dipping after the knife has hit the bread.....slicing the cheese on a plate with clean hands so it doesn't pick up crumbs. That is how careful you have to be. Toss the toaster if you use it. Pitch the wooden spoons and the strainer. Check your cooking spray, some have wheat.

What symptoms are you still dealing with?

You'll find great help here as you journey thru this.

Hi and thanks for responding. I turn 48 next month. The loss of fine motor skills and hand strength because of the neuropathy has been very annoying to say the least. Some things I simply cannot do when it involves using my fingers. Sometimes I have trouble just buttoning up a shirt. When I was in law enforcement the thing that was worrying me the most was firearms training because we did some at night in low-light conditions. It�s hard to reload your gun when you can�t really feel what you are doing in the first place. Not to mention my typing is slow and terrible when it used to be around 65 wpm with few errors and I didn�t look at the keyboard. I teach college courses online and it just makes things difficult at times.

As far as gastrointestinal symptoms, I feel as though things are starting to improve as long as I don�t accidentally gluten myself or take in lactose. Lower intestinal discomfort and gas are the most troublesome, but it has eased up. I would have the big D every now and then just out of the blue, but not as bad as I have seen many report.

Of course there has been no change in the neuropathy and I don�t expect any real soon. I become quickly fatigued and my voice always sounds hoarse. This was first attributed to GERD and led to a laparoscopic fundoplication surgery, which may have helped the GERD, but did nothing for my voice. One neurologist suggested atrophy of the muscles around the vocal cords could be the issue and I did have a muscle biopsy later showing non-specific muscle atrophy. So, we think it is all related. I did some voice therapy, mainly because I have a friend who is a voice therapist, and it helped some.

I am supposed (according to one neurologist) to stay in the gym regularly to help keep up muscle strength. This comes and goes. When something stops you from exercising for a short period, it is hard to start back. My strength is considerably less than what it was a few years ago and I know I need to keep at it.

[AVR1962]

Hi and thanks for responding. I turn 48 next month. The loss of fine motor skills and hand strength because of the neuropathy has been very annoying to say the least. Some things I simply cannot do when it involves using my fingers. Sometimes I have trouble just buttoning up a shirt. When I was in law enforcement the thing that was worrying me the most was firearms training because we did some at night in low-light conditions. It�s hard to reload your gun when you can�t really feel what you are doing in the first place. Not to mention my typing is slow and terrible when it used to be around 65 wpm with few errors and I didn�t look at the keyboard. I teach college courses online and it just makes things difficult at times.

As far as gastrointestinal symptoms, I feel as though things are starting to improve as long as I don�t accidentally gluten myself or take in lactose. Lower intestinal discomfort and gas are the most troublesome, but it has eased up. I would have the big D every now and then just out of the blue, but not as bad as I have seen many report.

Of course there has been no change in the neuropathy and I don�t expect any real soon. I become quickly fatigued and my voice always sounds hoarse. This was first attributed to GERD and led to a laparoscopic fundoplication surgery, which may have helped the GERD, but did nothing for my voice. One neurologist suggested atrophy of the muscles around the vocal cords could be the issue and I did have a muscle biopsy later showing non-specific muscle atrophy. So, we think it is all related. I did some voice therapy, mainly because I have a friend who is a voice therapist, and it helped some.

I am supposed (according to one neurologist) to stay in the gym regularly to help keep up muscle strength. This comes and goes. When something stops you from exercising for a short period, it is hard to start back. My strength is considerably less than what it was a few years ago and I know I need to keep at it.

I too was having troubles buttoning, felt like all my fingers were thumbs....it does improve. Clarity does improve as well. There for awhile I thought I had Alzheimer's as I was doing things with no memory, it was pretty scary but that has all gone away. I have been gluten-free since April. Just some issues with vertigo and ataxia left and hoping that with time that too will go away.

It is crazy how much strength you lose. I was an avid body builder in my 20's, loved to jog, did some long distance bicycling, basically have always been active but when this stuff caught up to me about 2 years ago now I went into a spiral downwards. I could not figure out why I had no energy, all my doc visits turned up nothing. Finally thinking I needed to do something to boost my metabolism I did a liver cleanse. That revealed it all. It has been one crazy journey, that I can say for sure!

When they did all the tests, did they by chance do a scan on your thyroid? If you are not happy with the progress of your hoarse voice you might ask doc about one. Half of all people develop a growth on the thyroid, called a nodule, before the age of 50. These are noncancerous growths. However, they can cause a hoarse voice, trouble swollowing, sore throat. I had developed a very odd cough that was not connected to anything else and on meds to shrink the growth.

[gailc]

I was finding the diet difficult. Since diabetes is in the family history and I expect to get it I asked Kaiser if I could take the diabetes class to learn to eat right. Conquor both diets at the same time, this will avoid going through the diet change shock again later. And may delay diabetes.

I learned a lot. Substitute brown rice for bread. That's ok except I still want white rice with Chinese food. The food on the diet works very nicely with the gluten-free diet.

I found canola oil to be very bad for me many years ago, and now I suspect olive oil, so none of that for me. Aspartame nailed my yesterday, as did oats and soy once gluten-free.

My preferred fat is AVACADO anyway, but I was told only a half an avacado a day. Ok I'm doing that.

I highly recommend a diabetes class, and at Kaiser the dietician didn't have to ask my doctor.

Food has become less important to me know on the gluten-free diet. I have lost most of my appetite and have lost a pound a month for the last 7 months on the diet.

I don't get hunger pangs(pains) now and I have to remember to eat. If I don't remember I get low blood sugar and I have to monitor(like a diabetic) those times now, if it is not one thing it is another.

Sometimes I wish I had never started the diet but rather quickly I think, "but I feel so much better now, I'll put up with the inconveniences"

gailc

[Marilyn R]

My neuro stressed the importance of exercise too. I don't work out like I used to, but if I'm brushing my teeth in the morning and I feel pretty good, I get in some squats. When I wake up I do some leg lifts (in bed, not that tough) and some push ups against the wall. You'll have to be really diligent with the diet, because if you have a little slip up you'll be smacked and it frumps you out from from wanting to do anything. Based on your grocery stores, I guess you live in the South. If you BBQ often, if you're using the same one you used before gluten-free, you should cook anything you grill in foil, or buy a new grill. I'm serious, and I'm seriously a scrubby Dutch person. (Clean and cost consciense.)

Good luck, wish you well.

[John6307]

I have a quick question since I am still new at this. Since it also appears I am lactose intolerant after having some problems with Lactaid (even if I take a couple of the tablets with the milk) I am thinking I may also have a problem with casein or perhaps whey proteins. My attention has been so focus on gluten-free products that I have overlooked some that say �Contains Milk.� Is a product such as the gluten-free Asian Chicken Helper, which I know is no longer going to be gluten-free soon, but our stores still had some of the gluten free, does the amount of milk it contains really enough to cause problems?

Let�s put it his way. Yesterday I was doing fine, no gluten, no milk until dinner. I had the Asian Helper, but I used shrimp instead of chicken, six hours later BAM! I had gastrointestinal distress and the big D for a couple of hours and still feeling poorly today. Could that have been it? Any thoughts are welcome.