Considering not being gluten free anymore
 

I am considering quiting the gluten free diet I decided to undergo some months ago. I have benn gluten free for nearly 4 months now. I want your advice on this.

THe gluten relation to autoimmune disease is not widespread here and it is not known by any physicians. I visited a nutriologist and she agrees thre can be health benefits from being gluten free for a while, but just for a while, because acording to her, gluten is also necessary.

I never take any blood tests and just decided to be on the gluten free diet by myself. I dind't follow it perfectly though because i took some products that may contain gluten such as yogurt, chocolate and others.

It is becoming more and more difficult to follow this diet. So i don't know if i should continue doing the diet for a bit longer or not. My pain is pretty much the same...

On the other hand, i wanted to ask you about the tens machine. I bought a machine las saturday and i used it for 30 minutes. I felt considerable releif. But yesterday i used it at night and today i am feeling a lot of pain. Could this be related to the TENS? Should i stop using it? Thank you

Being gluten free is not easy. I have negative blood work, but decided to try it and wore myself out with the cooking....hubby could not cook gluten free for me, and many days he cooks.

16% of Idiopathic Neuropathy is thought to potentially be due to Celiac Disease.

I think that you can live a healthy life without gluten, so I disagree with your nutritionist. However, the gluten free lifestyle is not without challenges.

On the TENS. I had one, and it never helped me one iota, however, many people get a great deal of relief. Perhaps you used it too long or at too high of an intensity. TENS does stimulate muscle to contract if on a high enough setting....I could if I wanted get my whole arm to move...now this was 20 years ago, and I hope technology has advanced since then.

Take a few days off from the TENS and then try using it for a shorter time, and keep the intensity low.

Yes, your nutritionist is totally wrong. NO ONE NEEDS GLUTEN IN THEIR LIFE! There is not a single nutrient in gluten that anyone needs. Nothing. This "whole wheat" craze that the industry is trying to push on people is just another way to make money. More and more people are becoming gluten intolerant all the time. I am a celiac and I belong to a celiac support. Every month we have at the very least, 10 new members. I find that very sad. The wheat they are growing now has been so scienitifically messed with that the majority of us can no longer tolerate it--it is not the wheat that our ancestors grew.

Monica, 4 months really isn't long enough, especially if you are not going totally gluten free and only you can do that. Many yogurts are gluten free, so are many chocolates, you just have to read ingredients. I am not sure where you are from, but most countries know more about celiac disease than the US does. The best celiac doctors in the US are not home grown, they are from foreign countries.

My neuropathy was caused by my vitamin and mineral deficiencies from undiagnosed celiac disease. If you are gluten intolerant and you do go back to eating gluten, then you will only being causing more damage to your system.

Evidence
 

There is so much evidence that wheat is just not good for the body. Even tho I am negative for gluten antibodies I am gluten free now. My disease was considered stable when I went to Mayo a year ago. I was tested there and told I had no issues with wheat. I added wheat back into my diet. I have gone to the bad place and back with problems related to my diseases in the past year. Did wheat play a part in that? I don't know. But on the oft chance that it did, I am gluten free since Jan. 1st this year.

If it takes even a small amt of this inflammation down and makes my life more bearable, it is a small sacrifice to bake my own bread. It just takes a brain shift to do it.

Billye

Deb
 

Could you suggest a book that you thing would be of help with this Diet.
Thanks Sue

Thank you for your replies.

This is so dificult to understand. I am 23 years old and was perfectly healthy for 21 years so.... why did gluten sudenly become a problem to me?? If i was intolerant to gluten, wouln't this intolerance have apeared earlier?? Or can something triger this intolerance?

:( It makes me so sad delicious cookies i love are full of this damaging substance: gluten... I love bread, cookies, oatmeal, pasta, beer, soy sauce... but i think the most difficult part of the gluten free diet is being around people who are offering you to eat this or eat that... I hate to disapoint people, sometimes when i reject somthing people feel that i am picky... i could explain, but it is uncomfortable to be explaining everyone your health issues... I have decided to tell people i am allergic to wheat. That is somethin easier to understand....

There is somethin else that has been dificult. I don't know how to know if somethin has gluten or not. It is not as esasy here because many labels don't mention ingredients properly. Do you know any easy guidelines? Or should i refrain from eating anything i am not sure has gluten or not??

Well i guess i will just put uo with the "side effects" of being gluten free

Thank you:)

Believe me, I empathize
 

Going gluten-free is not easy--simply because wheat, rye and barley products are used as thickeners and extenders in so many processed foods, and they are often well hidden in the ingredient list (modified food starch? malt flavoring?).

The best thing to do is to try to eat as UNprocessed a diet as possible. Fruits and vegetables, plain meats if you want them, eggs, if you tolerate those, dairy if you can handle that (although many people with gluten sensitivity also have caesin--dairy protein--sensitivity as well).

I miss bagels, pizza, cake . . .but there are some gluten-free varieties out there. These are often available at places like Trader Joe's or Whole Foods, and a little cheaper than at the specialty health food stores. One of the problems with gluten-free baked goods is that they are considerably more expensive. But some good choices can be found, and I urge you to post to the gluten board here, and read the Useful Websites section on it--there are many food/recipe/product suggestions/links.

Any doctor who says gluten is NECESSARY for human nutrition loses my respect immediately. There is NO one single food that humans must have--there are always other sources of calories, vitamins, minerals. Water is essential, but beyond that, there are many choices.

More and more evidence is accumulating that gluten can allow autoimmune reactions to be triggered by influencing the action of zonulin, which is a substance that mediates cellular spacing. Too much zonulin, and the spaces between intestinal cells becomes too large, allowing not so-friendly molecules to pass into the system and trigger reactions. (People forget that the real first line of immunoprotection in the body is the gut.)

I believe that heavy use
 

of steroids and NSAIDs leads to gluten intolerance. These drugs suppress Cox-2 enzymes in the lining of the gut, which are the gatekeepers to keeping things from passing into the blood stream like the gluten peptide and and other large
immune stimulating things that are in food. (there was a paper printed on this in 1999).

So yes, many may develop this with time. You had the very high dose of prednisone for 3 months and it could have damaged your GI tract.

Tinkyada pasta is just excellent IMO and even for non-gluten diets. It has a lower glycemic index being from brown rice.

In the final analysis, it is your decision, Monica.

There are some very good books out there. "The Gluten Free Bible", "Gluten Free For Dummies", I love the Dummies books, they are very well written, "Allergy Free", by Konrad Kail is another good book, I have another one, but I loaned it to a friend and can't remember the name of it. There are forums online that are very good, there is a froum here, but it isn't very busy. This is an excellent forum, with very informed people: http://www.glutenfreeandbeyond.org/forum/ , another forum, which is more talky is www.celiac.com . I am always available to answer questions. I have been gluten free for 7 1/2 yrs, my sister is also celiac and a dietician too.

I agree, it's not always easy, yet, it's not as difficult as it used to be. Many more companies are listing gluten free on their products now. You don't have to buy processed products. Eat whole foods. Eat potatoes, fresh meats, fresh veggies and fruits. Stay away from processed foods. If you like spaghetti, there is Tinkyada brand, which is gluten free and very good, and can be found quite often in the supermarket, they also make macaroni. You can make your own sauces. You can go online and find the companies that make gluten free spices, McCormacks have always been gluten free. I am not sure anymore about the spices, I am intolerant of so much that I eat very simple and stay away from all spices. I wish I was a "normal" celiac.:winky: I am intolerant of all grains, no nightshades, no cruciferous veggies, no red meats, no shellfish--so actually, going gluten free was the easy part for me.

You can google "gluten free foods" and find so much now. When my sister and I were trying to figure out what was wrong with us 8 yrs ago, the info was much harder to find and the doctor's knew less than nothing. When she asked her doctor to test her for celiac disease, he laughed at her. She insisted he do the testing and after he found celiac disease and realized how bad the damage actually was, he fell all over himself apologizing for his ignorance. Doctors still do not get it here. They are getting better, but they have a long way to go.

Ask away, if I know the answer I will be happy to help, if I do not know the answer, I will get it for you.

Deb

Personal opinion
 

I can personally vouch for these products: http://www.glutenevolution.com/

The pumkin bread is so wonderful and they will be coming out with a new rosemary bread soon. Can't wait for it. And the pie crust makes wonderful apple pie (and fruit pies). I tried all the mixes I could find and this one was the best by far. Sure beat all the rice breads. It tastes like a good wholewheat bread. And they are easy to do.

Billye

Deb and Billye thanks to the both of you,i've really got to do something.
Monica when I became a diabetic at a very young age,the diet was
hard to learn,and telling people how much I would love to eat all the goodies
I really had to take care of myself,they would respone ok or just
what am I going to feed you,I would say no problem You have many
good fooods right there on your table,i'll just help myself..
Now it's so much easier to find things surgar free ,but you must read
lables..

I am giving it a try in a few weeks as well..When your young you just don't
want to hurt feelings,but I promise you most people don't want you
sick..What ever you decide I wish you luck,you sound like a lovely
young lady,but I really don't agree with that statement your Dr. made,
It might make me think about checking out another and keep the diet.
Hugs to all Sue

Sue is so right! It may be time for a new doctor. A doctor like her will never stand behind you and your gluten free status. You have to take gluten free meds too and she has to understand that. My doctor has a list to refer too. I sometimes have to remind them of my gluten free status, they are busy, but then they will look at the list that I provided them with and will prescribe from the list. I will not take a med that I can not have. I can't, it's not that I won't, I can't. You have to look at gluten as poison, as should your doctor and she doesn't. When the doctor at least tries to understand, then you have a beginning. Your doctor isn't understanding you.

Keep with the gluten free. Don't give up.

Hey All,

Pardon me for jumping in. But I wonder about gluten issues as well. I have an appointment with my Gastro doc next week. So, besides having PN or in my case Central Pain, WHAT are the symptoms. I know I could go and look it up; guess I am just lazy at the moment. :) I do have Gastritis and GERD and have been told a mild form of IBS. But here is a new issue I found very interesting. I also have a fractured, arthritic and basically bent coccyx. A PM came online the other day and told me to google and read up on the ganglion that sits behind that...part of the sympathetic nervous system. So, I did...and ran across an article that stated, I THINK it was the sacral nerves 2 and 3 that can affect your gut!!! :eek: Anyway, the whole post was about myself having alternating constipation and diahrea which pretty much goes hand in hand with IBS. But now...this coccyx problem really makes me wonder. Anyway, any advice or knowledge about this that you can give me would be greatly appreciated. Oops, and I should add...I tried Miralax for constipation and it made me soooo sick. Then I had some Nulev tablets for the cramping which works wonders....including helping the pelvic floor problem. But the nausea and such is something else. What tests do they do to determine if it is Celiac?

I use
 

Ginger extract capsules for the nausea caused by my twisted stomach and intestines (malrotation). It works far better than any other drug I have used in the past 40 yrs for nausea.

Another thing that can cause irritable bowel, is fructose intolerance.
Some people get gas and diarrhea from that too.
http://en.wikipedia.org/wiki/Fructose_malabsorption
examine your foods that you eat, and see if you react to fructose.
It is in fruit juices, apple especially. Honey, anything sweetened by processed foods.

I really started reacting to honey...about 6mos ago. So I did a major fructose,
removal and no more "episodes".

I can tolerate a little, if eaten with other things...but very little.
I have NEVER been able to eat pears, and some fresh fruit all my life.
Doctors blamed my malrotation, but now I have sort of zeroed in on fructose.
Who would have thought?

I've spent my whole life trying to fix my GI issues...and it always boils down to
food intolerance.

I know you are out of the us but I feel with nutrient issues the key is to work with someone who specializes in that area. This meaning a doc and if you can see a nutritionist who deals with gluten issues. It can make the world of difference. When I was in my ed and to get into recovery I saw nutritionist who had no clue about ed and really it became harmful. When you have special need you really need someone who has a lot of knowledge. See to me if you have gluten issues eating it would be unhealthy not what that doc said. Of course if you are unbalanced then you will develop other issues. As for others when I was eating a high calorie diet I got a lot of comments and input. People are trying to help even if it doesn't. For me I just said I had health issue and am working with doctors to get well. You could say the similar and people should respect that. Unfortunatly we live ina world of idiots too. Being young is hard because friends don't understand always because they will eat a box of donuts for breakfast with a beer without a thought. You have to focus on your needs and health. When I get comments or the pushy people I self talk and remind myself what I need to do to be healthy and you too. I agree it is your choice but if you do stay on the gluten free maybe work on ways to make it more enjoyable and that way you can be excited about it. There are some fun blogs too and I bet even with young people going through the same issues.Hang in there.

Just for informational purposes--
 

--the general first line serological tests for gluten sensitivity/celiac are:

Anti-gliadin IgA
Anti-gliadin IgG
Anti-transglutaminase IgA
Total IgA

The first three are antibody tests; the fourth is to determine if one is IgA deficient, which can, if one is, throw off the other IgA test values.

The most specific is the third, but the first two are more sensitive. In fact, a number of people with non-celiac gluten sensitivity show up with an isolated high anti-gliadin reading, which may also be more associated with the neurological consequences of gluten sensitivity.

One should really go peruse the Gluten File that Cara--jcccglutenfree--has compiled to read a lot of the research on this (I especially recommend the papers by Dr. Hadjivassiliou):

http://jccglutenfree.googlepages.com/diagnostictesting

http://jccglutenfree.googlepages.com...niggantibodies

Thank you all for your support and ecouragement. I really needed it because both my neuro and my nutritionist told me gluten was not really the onw to blame. I don't really know wether it is or not, but if it can give me some releif or avoid future problems, i will stick to the gluten free diet.

Billey, do you really bake your own bread?? How do you do it??? I was told about a person in my city who sells gluten free bread. So can bread be totally gluten free?? I mean, should i trust the protein is completely withdrawn from the wheat. This bread looks flat, which leads me to think it has no gluten, but is this to trust???


About the meds, how can i know if the meds i take are gluten free?? I am currently on lyrica, imuran and novotiral, do you know if these meds are gluten free?? or How can i find out???

Thank you for being around:)

Monica--gluten free bread does not have wheat in it. Wheat can never be gluten free, wheat is gluten, gluten is wheat--it's the same thing. Wheat, rye, barley--they all are gluten. A gluten free bread is made with flours made from a different grain source, such as: corn flour, soy flour, rice flour, bean flour, or maybe potato flour.

You need to read some good books about gluten free foods. Never let someone convince you that their "wheat" bread is gluten free, because it isn't possible. OK? Many people make their own breads using a bread maker. There are even gluten free bread mixes out there to buy. Check out the forums I listed earlier for the best mixes or good recipes.

almost
 

I think I'm almost totally gluten free. My labs were negative, and my genetic testing, which is extremely accurate, basically is against my having celiac. On the other hand, I do not digest wheat well, and I have enough GI problems without adding what wheat does.

So, I have cut out all products that I know to have wheat, and eat mainly fresh food. I do eat some processed foods (canned soup, for instance, ketchup, soy sauce, things that would appear to not require gluten), so I figure my gluten load is low, but not zero.

I'm not sure what I'd gain from reading the fine print and eliminating the small quantities of processed foods.

mrsd thank you for bringing up the ginger,i brought this up to
my brother,he said what's wrong with you,that was the best
thing med we ever took,i'm still taking it,don't you rem .telling me to
take it year's ago well no...when he stop's laughing and being rude,
i will talk to him again. sue

Kathi, I'm sorry, I missed your post before. In the celiac world, we honestly do not believe there is any such thing as IBS. To be honest, I actually had a doctor tell me there is no such thing as IBS, he said to me, "IBS simply means, I BE STUMPED!" Before I found about about celiac disease, I was diagnosed with IBS and that certainly was not my problem. I also was diagnosed with spastic colon, nervous stomach, stress, and it's all in your head (my personal favorite).

They can do a blood test for celiac genes, which isn't always conclusive, they can do an endoscopy, which isn't always conclusive either. There are so many false negatives in a celiac/gluten intolerant world. Sometimes the best test for gluten intolerance is going gluten free and seeing how you feel. Not everyone is celiac, many, many people are gluten intolerant and need to be gluten free. Celiac disease is like being a type 2 diabetic, gluten intolerant is like being pre-diabetic, you don't have the disease yet and maybe you can stop yourself from getting it and causing more damage.

For Monica
 

yes, I do bake my own bread. I use a mix that I get from "Breads by Anna". It's the only one I've found that comes out not tasting like bland rice bread. It actually tastes a little like whole wheat but has NO wheat or gluten in it. I buy it on line from this site: http://www.glutenevolution.com/ The pumkin bread is delicious. You can buy a mix to do in your bread machine or bake in a loaf pan. You will have to read the descriptions to decide which one you want. I've tried them all and like them all.

I do NOT like the mixes or breads that are made of rice flour.

Billye

Being an idiopathic PNer, I am always thinking of possible causes. I am starting to think about gluten. I have never been tested, I don't think. I have IBS (almost always contipating type), depression, and PN. I have a doctor's appt. in a couple of weeks and will ask to be tested. I have not been eating much gluten in several months, however, because I ahve been on a weight loss diet and have eliminated bread and pasta,etc.
I assume that this may bias the test? anyone have any idea how much gluten I would have to eat to make the test valid? Is the testing pretty conclusive? Thanks for any input. There has been a lot of good info here!

I have been tested (blood antibodies) twice and was negative both times, and once I feasted on wheat germ for weeks ahead of time...just to really challenge my system (to no ill effect). I am negative, so, I don't go gluten free. Neither do I plow down wheat for the sake of chowing on whole wheat.
I have an EGD and mannometry coming up due to esophagel problems, so we will see what that yeilds. I do have substantial autonomic abnormality and symptomotlogy.

My GI guy refers to the GI system as the second brain. I always remind him of what the tail end of the GI system is called, LOL. (We do get a long quite well).

Some folks feel much better gluten free. I noticed no difference. If it makes a difference, I would certainly follow it. When they do my next colonoscopy, I will ask for villi sampling which is apparently the only fool proof way to determine celiac status.

You know constipation and slow transit, can be small fiber neuropathy-autonomic.

Oh, I did have a normal Vitamin D level!! I am awful, as I don't use sun screen...I use a hat and long sleeve shirt, to prevent burning....or if cycling then I use sunscreen, so I do get my sun in the summer....I am out all the time. I did start taking vit D but then got sloppy, but what I took must have been good enough. I also take B-12, sublingual...because my stomach has never been right.