Please Help

[danikali]

Okay......

I just talked to the doctor. She said that all of my tests came back normal, including the biopsies. She said the only thing that was abnormal was that my colon wall was inflamed. She said that she didn't know what that could be caused from until I told her that I went through enterolab and tested positive for gluten intolerance. Then she said that the inflamation could be caused from foods that I am allergic too. Then she said that I should go see a rheumatologist and I told her that I did and they couldn't find anything either. I told her since I have been off of gluten for about a week and a half now, my stomach problems are mostly gone (except I still don't "go" everyday) but the bloating and pain and gas are all gone. So I asked if I should see a nutritionist to help me figure out what other foods are bothering me and she said no, an allergist. I told her I saw one and they tested me for a bunch of things, but only for IMMEDIATE reactions to foods, which I know I don't have. I never get hives or vomit or anything like that. And she told me to see a nutritionist to help with the gluten thing and an allergist to find more things that bother me...........?

I don't know what to make of all of this. My knees and head are still hurting........And I'm only eating natural natural foods. For example, today for breakfast I had an egg and some trail mix. For lunch I had a banana an apple, some gluten/dairy free crackers and another egg. :

So anyway, I have no clue anymore. Does anyone know which direction I should take from here? I wish I could give up but it's like, if God wants me to live, well I HAVE to find a way to live a normal life. But being sick most of the time is not a life at all........

Should I go to a nutritionist? Another allergist? Another GI? What do you guys think? Any advice from anyone on any of this? I feel like I am falling deeper and deeper in a hole!

Thanks,

Danielle

[Rachel--24]

The allergist will probably only test you for IgE "true" allergies...which you know you dont have. Have you ever been tested for IgG delayed-onset food sensitivities? That might be something to look into? Also what kind of trail mix are you eating and gluten-free crackers are you eating? You might be better off not eating any processed foods at all for awhile.

[floridanative]

Danielle - I'm so sorry to hear all you're going through. But in my opinion many docs just don't know much about celiac disease or gluten intolerance. See if there's a way to find a GI in your area which is highly trained to spot celiac disease. But you mentioned that you responded to the diet positively so that may be your answer. Maybe you're allergic to eggs too? This condition is just so hard to pin down even with good docs and I personally haven't many of those since starting my quest for answers. Good luck and hang in there. I think if you are persistent you will eventually get the help you need.

[danikali]

I'm eating crackers and trail mix from whole foods that were on their list of gluten free items. The crackers only have like three things in the ingrediants, and that doesn't include "natural flavor" and nowhere does it have a warning about being made in the same facility as wheat, etc, etc. And it says gluten/dairy free on the box.

Anyway, I know, I've been to an allergist. She didn't find anything! I've never been tested for delayed food reactions.......but what kind of doctor would do that for me? A nutritionist? Or do I have to pay for it on my own again like enterolab? Can I do that ELISA testing on my own or should I have a doctor order the tests? It's got to be something I'm eating..........I just have no clue what?!

[elisabet]

sorry to hear about your problems,I know what you are going though.My son is really allergic to almost every thing,but is much better now.after 6 months gluten free ,casein free and soy free.

we have eliminated egg from his diet,his immunologist recommended that and and most of his problems were gone in 6 weeks time.

just hang in there. best of luck elisabet

[Rachel--24]

Can I do that ELISA testing on my own or should I have a doctor order the tests? It's got to be something I'm eating..........I just have no clue what?!

I did ELISA testing through Great Smokies...which you do need a doctor for. If you go through York (there are others here who have used them) you can order the test yourself. Its expensive though. Dont know what York charges but I paid $350. Do you keep a food diary? IMO its almost a necessecity...I've been keeping a diary for almost a year. I would start eliminating the main allergens first. Obviously gluten, then dairy, eggs, yeast, definately no alcohol, and whatever else you may feel is contributing. Write down your symptoms and what you eat everyday. Its helped me figure some things out but it takes time.

[RiceGuy]

Good advice thus far. I'd also say to eliminate possible problem foods. The gluten you know already, and it sounds like you eat eggs often, so try avoiding those along with nuts, and the others which have been mentioned like dairy, soy, casein, yeast, alcohol, etc. Don't overlook sugar either, and some find corn to be a problem too. I know it sounds like a lot, maybe too much, but I can tell you that once you find the culprit(s), you'll be so glad you did, and you can add the rest back in one at a time and see how it goes.

Take comfort that many find that once the gut heals, there are foods which no longer bother them. It can take months to really get appreciable results. Heck, I've been gluten-free for about a year I think, and still I got a long way to go.

[ravenwoodglass]

Okay......

I just talked to the doctor. She said that all of my tests came back normal, including the biopsies. She said the only thing that was abnormal was that my colon wall was inflamed. She said that she didn't know what that could be caused from until I told her that I went through enterolab and tested positive for gluten intolerance. Then she said that the inflamation could be caused from foods that I am allergic too. Then she said that I should go see a rheumatologist and I told her that I did and they couldn't find anything either. I told her since I have been off of gluten for about a week and a half now, my stomach problems are mostly gone (except I still don't "go" everyday) but the bloating and pain and gas are all gone. So I asked if I should see a nutritionist to help me figure out what other foods are bothering me and she said no, an allergist. I told her I saw one and they tested me for a bunch of things, but only for IMMEDIATE reactions to foods, which I know I don't have. I never get hives or vomit or anything like that. And she told me to see a nutritionist to help with the gluten thing and an allergist to find more things that bother me...........?

I don't know what to make of all of this. My knees and head are still hurting........And I'm only eating natural natural foods. For example, today for breakfast I had an egg and some trail mix. For lunch I had a banana an apple, some gluten/dairy free crackers and another egg. :

So anyway, I have no clue anymore. Does anyone know which direction I should take from here? I wish I could give up but it's like, if God wants me to live, well I HAVE to find a way to live a normal life. But being sick most of the time is not a life at all........

Should I go to a nutritionist? Another allergist? Another GI? What do you guys think? Any advice from anyone on any of this? I feel like I am falling deeper and deeper in a hole!

Thanks,

Danielle

How about going back to the allergist and having him guide you through an elimination diet? That can help pick up other intolerances as well as gluten. It isn't quick but it can be very effective and not real costly since you have already had the allergy part of it done.

[tarnalberry]

How about going back to the allergist and having him guide you through an elimination diet? That can help pick up other intolerances as well as gluten. It isn't quick but it can be very effective and not real costly since you have already had the allergy part of it done.

I concur with the idea of doing an elimination diet at this point. You'll have to avoid any processed foods - that includes the crackers you're eating - to do a thorough job at an elimination diet, and if you do a rigourous, strict one, it's really no fun and takes a while, but it is an invaluable source of information.

[mookie03]

Danielle- thats terrible! i am so sorry that you are not feeling better! i never actually did an elimination diet b/c the gluten free diet cleared things up for me, but if you are still feeling sick, you may want to consider it. Although, it does sound like u are responding well to the diet, so you may want to give ur body anther week or two to recover from glutening yourself for the tests and to recover from the colonoscopy etc. if u are still not feeling better, it may be more than just gluten.

Also, i second the idea of a food diary. i dont keep one anymore, but i did for my first few months of gluten free. it helped me tremendously b/c i could easily figure out what foods affected me in what ways and it was helpful to keep me on track w/ the gluten free diet. its a great idea.

I think you should see a nutritionist. they tend to be fairly open minded to intolerances and allergies (more so than GIs and allergists at least) and they can help you- either with an elimination diet or just with helping you figure this out.

Hang in there!!!! You will get to the bottom of this...

[Claire]

My two cents worth.

I have been this route - seen them all.

An allergist may or may not be open to testing with an elimination diet.

A nutritionist, if a good one, can do that.

Blood tests for Delayed Food Reactions are expensive and produce a lot of false positives. They do find the culprits but they are lost among so many things that are not positive. I tested positive for 30 of 100 foods. Many of them I knew were right. Your body talks. There were several that I doubted. These are the ones that I tested on an elimination diet. I was right. They were false positives. A lot of money and I wound up doing an elimination process anyway.

If you have a cooperative GP you can possibly get a written order for the Elisha if you want to have one. . Immuno Labs will send you the kit - you go to the lab with the kit and the doctor's order and it gets done. Results come back to your doctor and to you. Other labs will probably do the same. Insurance will probably cover under these circumstances. I got genetic testing covered in this manner.

Personally I would not do the Elisha again. I would go the Entrolab route that looks for the prime suspects. If you get that nailed down and still have problems then you can work on the elimination process - with or without a nutritionist. That does leave the allergist out of the picture. Delayed Food Reactions, like Celiac, are not an allergy per se. Some allergist won't even consider this issue.

Personal opinion - pass on dieticians, use a nutritionist if you need help with an elimination diet and pass on the allergist as well.

This is very subjective - just how I feel from my own experiences. Not necessarily right. Claire.

[darkangel]

I have to agree with Claire. I did the ELISA test - paid out of my own pocket - and it was useless to me. It basically showed I wasn't sensitive to anything I'd been eating. My blood test for celiac disease came back normal, after which my doc told me he didn't know what else to do for me. I've seen a lot of different doctors... six GIs, an integrative GP, a doctor who specializes in treating candida. None of them have really helped me and some have done much more harm than good.

An elimination diet would probably be the best route for you now. If you can find someone to guide you through it, that's great, but I think it's difficult to find someone like that. I have yet to find anyone in my area. You can do it yourself. It's not fun and it's not easy, but it will give you the answers you're seeking.

As strange as it may sound, I recommend you read "The False Fat Diet" by Elson Haas. Don't let the title fool you. This book is an eye opener about food reactions and sensitivities. Dr. Haas gives you a list of the most common offenders - dairy, wheat, corn, sugar, eggs, soy, peanuts, tree nuts - and tells you how to do elimination diets of varying levels of difficulty.

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Once you've eliminated the foods that are bothering you - and at first there may be many of them - your gut will have a chance to heal, improving your digestion and allowing you to eventually add forbidden foods back in. You've discovered a gluten sensitivity - regardless of your test results - and are already feeling better. The next step is to find out what else is bothering you. This process is going to take some time and the healing of your gut is going to take some time. Keep your eye on the little improvements you're making every day. Keep a food diary to track what you're eating and your reaction to it. You'll start to see the patterns.

You may also want to check out "The Pulse Test." I wish I'd known about this book before I spent a ton of money on ELISA. The concept is deceptively simple... your body reacts to allergens by increasing your pulse rate. The book tells you how to determine your normal resting pulse rate and how to test different foods for reactions by tracking changes in your pulse.

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[danikali]

Thank you everyone so much!!!

I know that first of all, I need to give my body some time because I WAS feeling better my first week gluten free/dairy free.......the black and blue marks disappeared, the muscle and joint pains subsided and the migrane was gone......... and then Sunday came and POW!!!

I'm feeling a little better everyday. Not as good as last week, but I know I have to be realistic here.

Anyway, I agree with everyone on the elimination diet if I don't feel a lot better by next week. But my question is, how exactly do you do that? How do you know what food is bothering you, especially since sensitivities are delayed? It seems so hard and confusing.........has anyone done it successfully by themselves and have any advice on how to start?

And I agree with the ELISA testing....not from experience, but if these tests are for food sensitivities, don't you have to be eating plenty of that particular food to create an antibody for it? Like gluten for example; I was eating it every meal for about a month and a half and making myself sicker and sicker, and it still came up negative on the blood test! Enterolab is the only test that has given me an answer, even though I already knew from eliminating gluten from my diet! haha This is crazy!

Anyway, thanks for your replys, concerns and examples.

-Danielle

[mightymorg]

Danielle, I would suggest doing an elimination diet (if you do) with a registered dietician. Not a "nutritionist." If they have the title of RD that means they have a degree in nutrition and have been acknowledged by the ADA. Anyone can label themselves a "nutritionist." RDs have the education, and they can make sure you're getting proper nutrients while on this diet and give you a ton of good info and support. (My major is nutrition... )

[darkangel]

But my question is, how exactly do you do that? How do you know what food is bothering you, especially since sensitivities are delayed? It seems so hard and confusing.........has anyone done it successfully by themselves and have any advice on how to start?

The False Fat Diet book I recommended to you tells you how in very simple terms. If I remember correctly, it offers three different levels of "difficulty" so you can ease into it, if you need to.

There are many other books out there on elimination and rotation diets, food allergies, food sensitivities. Here's one called Food Allergies and Sensitivities. I haven't read it, but it's gotten rave reviews.

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Your local library can be a good source of info without having to buy alot of books. There's also plenty of info in the Internet. Here are a few links...

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[danikali]

Alright, well, I guess I should really get one of these books for me to start feeling better.........I'm so hungry just thinking about giving up more food......

But thank you.

Do you guys know if most intolerances go away after being off of gluten for a while. And if so, how long, usually?

Thanks,

Danielle

[RiceGuy]

Do you guys know if most intolerances go away after being off of gluten for a while. And if so, how long, usually?

Well, an intolerance like the one for gluten is not the sort to ever go away. I think what you mean is sensitivities caused by the damage from gluten, yes? The ones which are caused by the malabsorption and leaky gut should subside as the healing takes place. How you react to such foods after complete recover will depend on your own particular system. Some sensitivities may disappear, others may not. What looks like an allergy may be due to the gluten reaction, so some effect might be seen there too.

[Claire]

I feel I must add an opinion to those of mightymore regarding dietician vs. 'nutritionist'.

Dieticians have basic nutritional education. Few if any of them are well versed in illnesses and disease.

They are notoriously 'professionally politically correct'. There are certain things they do well. Dealing with the complicated issues surrounding autoimmune diseases is not one of them. My cousin's dietician has given her some profoundly bad advice.

Maybe anyone can call himself/herself a nutritionist - true for dieticians as well - but all one has to do is check up on the credentials. They have boards for certificantion just as dieticians do.

Doctors are licenced also - that doesn't make them worth the price of an office visit. Claire

[Claire]

Well, an intolerance like the one for gluten is not the sort to ever go away. I think what you mean is sensitivities caused by the damage from gluten, yes? The ones which are caused by the malabsorption and leaky gut should subside as the healing takes place. How you react to such foods after complete recover will depend on your own particular system. Some sensitivities may disappear, others may not. What looks like an allergy may be due to the gluten reaction, so some effect might be seen there too.

Hi again. My personal experience - sensitivities did not go away. I was gluten restricted for a long time - only gluten-free since August. I gave up many foods - for years - but when I tried to reintoduce had no luck or should I say bad luck.

I am surprised by the time period that is being quoted for intestinal healing. Not at all what I was told. Claire

[RiceGuy]

I am surprised by the time period that is being quoted for intestinal healing. Not at all what I was told.

What were you told? From my own experience, it can really take awhile, as I've been gluten-free for about a year now. I'm not anywhere near healed. I was still going downhill for most of the time since going gluten-free. I am guessing from all the symptoms that my gut was nearly useless as a means of digestion and deriving any nutrients whatsoever. That does seem to be getting better, but very slowly. Recently, with a lot of reading on this board, and on nutrition in general, I've begun to focus more heavily on certain foods. I am getting noticably good results from this.

[danikali]

Okay, thanks for the info.

Yeah, I've been having problems so long, with so many foods and drinks that I really can't imagine my life without them. I couldn't imagine being able to have some alcohol without bladder problems and stomach and back aches. I can't imagine going a regular "you know what" every day of my life. I can't imagine being able to have milk without getting bloated and irritable..........

But I do see improvements in the really really bad things already, which makes me happy even if I can't eat and drink everything. My stomach is REGULAR EVERYDAY! I mean, it is not bloated at all, and if I suck it in or push it out (it's a little test I do-hehe), it doesn't hurt at all! I remember when I used to cry every day because I would eat, hmm, a sandwhich? and nothing else at all, for THE WHOLE DAY and my stomach would be so bloated I wouldn't be able to feel comfortable wearing my jeans! I'm 5'8 and 120lbs or something like that, but I always ALWAYS felt fat because my stomach ALWAYS looked like I was pregnant! I would have maybe one day a month (if that) where I would have a normal flat stomach and those were my "good days." I never understood it! But thank GOd I do now!

Annnd, my knees aren't hurting as much anymore......all of the body pains are finally subsiding again after that horrible colonoscopy prep.

Anyway, I just got a name of a collegue of the infamous Dr. Green, from the man himself, who takes my insurance. So even if I have to wait a while to see her, at least I know I should be in good hands because she concentrates on Celiac Disease. Maybe she can help me with my diet as well?

Thank you all for your replys! This disease is a crazy crazy puzzle that because of this forum, and the people that make it (all of you reading this!), make it a little bit less scary.

Thank you!!

[jerseyangel]

dani--so nice to hear you're feeling better and sounding happier! Good news about the Dr., too

[darkangel]

I'm sorry if my responses have seemed abrupt. I know this is a confusing and stressful time for you. When you're sick, it's hard to process all this information and cook things from scratch and worry about every bite you put in your mouth. It's a struggle and most of us don't have anyone at home to take care of us and cook special foods. Doctors aren't much help and often make matters worse.

It's wonderful to have a supportive community like this one where you can ask questions and share experiences. Sounds like you're starting to get a handle on things. Hope you're feeling a lot better soon.