Frustrated That Nothing Is Working

[Guest Kathy Ann]

I am going around in circles. I have been ill for many years and no one has ever been able to help me. I've tried both conventional doctors and alternative ones. Knowing very little about celiac or gluten intolerance, I innocently took a saliva test to see what my levels of cortisol were, since I'm frequently all revved up and nervous for no reason. I decided to check the boxes for 3 major protein allergies of gluten, dairy (casein) and eggs while I was at it. I wasn't really expecting them to come back showing anything. Well, it came back that I was positive to all 3! I made an excited assumption that maybe this was FINALLY the breakthrough I had been looking for and immediately eliminated them from my diet. I noticed no improvement after a month. I called my doctor and then the lab for some help and clarification. They both said that their saliva test had a reputation for being very accurate and that these intolerances were usually from birth and very permanent. I then decided to see what else I was allergic to and did the big ELISA test the next month. It came back with a few more foods, but didn't include a reaction to gliadin or eggs. I called the lab about the contradiction. They said that the antibodies being tested for were different on both tests and it didn't matter if they didn't agree. They were insistent that I was indeed allergic to everything on BOTH tests. They also said that their ELISA test had a reputation for being very accurate. Then I read about the stool test. I decided to do that one as well. In spite of the fact that I had been totally off all gluten, dairy and eggs for about 3 months by then, it came back that I likely had celiac and was allergic to dairy. In the meantime I just kept eliminating all the foods on all the tests and hoped for the best. Well, it's been 6 months. I don't feel any better, unfortunately. But these tests are hard to ignore. It seems to make so much sense to me. My medical doctor completely disregarded all 3 tests and will insist on a gluten challenge, blood test and probably a biopsy before he will consider celiac.

If I had known, I would have at least taken the medical blood tests BEFORE eliminating gluten. But it's too late now unless I want to risk a gluten challenge.

[mouse]

Have you cut out ALL gluten or just wheat. Have you checked for any possible cross contamination. That means your toaster, your lipstick, condiments that have been double dipped (gluten used knife stuck in jelly, etc.), shampoos that might get in your mouth. Things of that nature. I am sure that other's will post that might have more ideas then I do.

You might consider Enterolabs (sp) that others have used. Some doctors have accepted it and some have not. To do the blood test or a biopsy requires you eating gluten for 3 to 6 months. And then you can have a false negative or the biopsy might not have been taken from the right spot.

I forgot to say Welcome to the forum. You should get much help from members so that you can recover your health. Good Luck.

[Guest Kathy Ann]

I've tried to be extremely careful, even down to cosmetics, shampoos, everything. I admit that my family is still eating things I'm very allergic to, but I'm careful to always use new utensils, different toasters, my own jars of food and all that stuff. I suppose if I'm VERY sensitive, it's possible to have gotten wheat fumes or microscopic crumbs, but I've honestly tried to be really fanatical about it. And yes, I have eliminated all gluten, not just wheat. Enterolab is the lab I got the stool test done from. So it should be accurate. Is it possible that it just takes a terribly long time to recuperated after so long on all the offending foods? I don't expect to get well overnight, but it sure would be nice to see SOMETHING after 6 months to know I'm on the right trail.

Another quick question. Do most of you keep your kitchens completely free from gluten and other allergy foods even if you are the only one with these issues? It is a difficult thing for me to ask my family to do. If I knew I was that sensitive and must do it to survive, that would be the obvious thing to do. But have most of you found that to be necessary? What about washing my dishes in the same dishwasher sloshing around with bread crumbs, ice cream residue and the like? How much impact can that have?

Thanks for the input!

[Matilda]

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[Ursa Major]

Hi Kathy Ann, and welcome to our board.

What other intolerances did the ELISA test show? I get almost the same reaction I get to gluten from all grains, including rice, and from potatoes as well. If you follow the links in my signature on lectins and salicylates you may get some clues as to what your problems are.

Also, at your age (which is close to mine, of course) it is entirely possible that it will take you much longer than six months to see a positive difference, and there is a good likelihood that your intestines will never heal 100% (which is no reason to give up, of course).

With all the test results you listed, I have no doubt whatsoever that you are at least gluten intolerant, if not have celiac disease. Your doctors (as are most doctors, unfortunately) are behind the times by not accepting the testing you've done. No matter, by coming here you've taken your health into your own hands, and together we might be able to figure it out.

Never give up, you're not alone!

[2kids4me]

I would stick with what you have done so far. Celiac or any malabsorbtion issue may result in low B12. Low B12 can cause ataxia and nervous system issues (like neuropathy). I need B12 injections cause oral didnt help, but that is something you can ask either the conventional or naturopath doctor about - taking additional B12 either orally or by injection and seeing of this helps.

Its only one possibility.

You have been through so much and you are doing everything possible. If you have multiple food allergies/intolerances it doesnt mean all symptoms are connected to that alone - you can have 2 separate issues causing conflicting symptoms. It is hard for any doctor to see this because they are trained to find one condition that explains all the symptoms, when they can't - it becomes a stumbling block.

Hope this makes sense...

Trying B12 to see if it works will do no harm.... excess B12 is eliminated in the urine

[Guest Kathy Ann]

Thanks for the replies!

I am allergic to many things. Since I'm not feeling at all well yet, it makes me wonder if I should just eliminate all grain and starch. I use rice and occasional tapioca flour or arrowroot and bean flours to make fun things and gain some variety. But maybe it is a problem. It didn't show on the test, but sometimes I get the vague impression that chicken bothers me. A paleo type or really strict plain diet might be best for me right now. Eating that way can be pretty boring, but it will be worth it if I feel better at all.

Thanks again everyone.

[AndreaB]

Thanks for the replies!

I am basically allergic to corn, eggs, dairy in every form, gluten, soy, almonds, kidney beans, peanuts, sesame seeds, blueberries and pineapple.

I am allergic to some of the things you are. dairy, gluten, soy, kidney beans, pineapple.

I would cut out all bean products if you can. I am allergic to navy beans as well but have had a problem with red beans. So far the only beans I've tried again that I can tolerate are garbanzos. Dairy and soy are in a lot of things as well as corn. I assume you are allergic to corn and all forms of it. From what I've learned corn is in literally everything as well. Did you know that citric acid is from corn (or grown on it...I don't know how that comes about). Go as clean as possible in your diet, keep a meticulous food diary and after 4-6 months (minimum of 2 months) start adding some things back in, one every 2-4 weeks. Avoid all processed foods if you can also. That's where a lot of your soy, corn etc is.

Oh, and welcome to the forum Kathy Ann!

[Guest nini]

I was 34 when dx'ed and at six months while I did notice some improvement, it still took me two years to feel much better. I'm still not completely well.

Another thing that goes hand in hand with multiple food intolerances is systemic candida. You may want to explore a candida cleanse and see if that helps.

The testing that you have done so far IS valid, and it just may take you some time to get well as you've been poisoning yourself for quite a long time. Be patient and it may help to keep a food journal and see if you can track a pattern of certain trigger foods.

[Canadian Karen]

I am going around in circles. I have been ill for many years and no one has ever been able to help me.

I am with Ursula on this one. This sentence jumped out at me when I read it. Many years of damage being done necessitates the need for a longer period to get better. It is not unusual at all for some to take 2 years before the damage is reversed and they start to notice a difference.

I say stay the course.......

Oh, and welcome!

Karen

[oceangirl]

I am with Ursula on this one. This sentence jumped out at me when I read it. Many years of damage being done necessitates the need for a longer period to get better. It is not unusual at all for some to take 2 years before the damage is reversed and they start to notice a difference.

I say stay the course.......

Oh, and welcome!

Karen

Hello, Kathy Ann.

I understand your frustration although I DO have much improvement after almost 6 months. I agree with others who've said to keep an open mind to other potential problems or issues. I do have to say that my family decided to go gluten-free in our house because I kept getting cross-contaminated. Now pretty much the only gluten is in all the pet food (which is everywhere with 5 cats and 2 large dogs). I am starting to wonder if that's what's getting me now, too. (I still get symptoms,haven't gone longer than 5 days feeling really well) Haven't found any glutenfree pet food yet though. You might want to read "Dangerous Grains"- very easy, quick read- it gives much insight as to why gluten isn't really that good for ANYBODY.

Welcome and good luck!

lisa

[marciab]

Definitely hang in there with the diet. I was still feeling crappy at 6 months. Even 9 months. I am 51.

Have you done a gluten challenge to see if it has any effect ? A lot of us do this, me included, to convince ourselves that this diet is worthwhile.

I didn't see any reference to iron levels, so I thought I would add that to your to do list.

Celiacs lose out on a lot of nutrients, but being female you are very likely to have a problem here.

Mine was tested and determined to be low, so my doc prescribed some baby iron (yes, baby iron ) since my stomach would not tolerate any supplements.

Also, I have noticed I feel worse if my daughter is eating her gluten filled food in the house. We are working on that one. She is at college now, but is in for a big surprise when she comes home.

I am feeling much better after 1 year gluten free. No more myoclonus/seizures, insomia, mind numbing brain fog or wobbly legs as long as I keep the gluten out of my diet. Actually, the walking problem just cleared up at the one year mark.

Marcia

[ArtGirl]

I'll just add my two cents worth. I am also allergic to corn. And corn is a BIG issue for me. I was puzzled why the gluten symptoms didn't clear up - at least get less - with going gluten and dairy-free. I'm 59 and have been ill for a long time, so I was expecting slow progress. It wasn't until I eliminated the corn that I could see progress.

There is a forum for corn-allergic people, similar to this one, that I learned how to eliminate corn - they have a list with all the hidden corn ingredients. In addtion to citric acid, check any medications and supplements you're taking. Almost all of them have a corn derivative like dextrin in them, and many OTC meds have cornstarch. Xanthan gum is grown on corn and that bothers some people (the jury is still out for me).

Open Original Shared Link

You can't go wrong, however, by eating whole foods and not relying on processed foods which contain additives and chemicals that your body doesn't need and may hinder healing. It's not hard to cook good meals with plain ingredients - just don't make gravy. Use fresh or dried whole herbs that aren't packaged as mixtures. Snack on fruits and vegetables (okay, I know, they're not as good as chips!)

Oh, yeah, welcome to the forum.

[GFBetsy]

Thanks for the replies!

I am basically allergic to corn, eggs, dairy in every form, gluten, soy, almonds, kidney beans, peanuts, sesame seeds, blueberries and pineapple. Since I'm not feeling at all well yet, it makes me wonder if I should just eliminate all grain and starch. I use rice and occasional tapioca flour or arrowroot and bean flours to make fun things and gain some variety. But maybe it is a problem. It didn't show on the test, but sometimes I get the vague impression that chicken bothers me. A paleo type or really strict plain diet might be best for me right now. Eating that way can be pretty boring, but it will be worth it if I feel better at all. Obviously, I'm a nightowl and fully aware that I probably need more sleep too. I go to bed late and sleep late in the mornings. I feel terrible upon awakening, however, no matter when I go to bed or get up.

I appreciate all the ideas. Something will surely click. How do you all avoid feeling like an outcast and sinking into self-pity when you are SO careful and still feel awful while everyone around you seems to feel great while eating the most horrible gooey delightful junk? I'm trying to be strong. I guess I'm still grieving. I'll maybe tell you tomorrow about my notorious Alaskan cruise experience. My husband and I earned a free cruise through our business and it occurred only a month after I became aware of my condition and was attempting to be gluten free. I'm too tired tonight. But it's a very interesting story.

Thanks again everyone.

Kathy Ann -

Have you had your Thyroid levels tested? That "not feeling awake until 9 pm and being exhausted all day long" sounds like Thyroid issues to me. (Of course, it could be something else . . . this is just one possibility.) Some other symptoms of Thyroid problems (others jump in if you've got more information) include swelling in the feet and unexplained/unloseable weight gain.

I've also heard that Thyroid problems can cause your adrenal system to try to compensate by producing way too much adrenaline (sp?) (which is one of the other things you mentioned). Celiac is also associated with thyroid problems - so if celiac is your problem, I wouldn't be surprised if you found you have thyroid issues, too. If you go in to be tested, ask for a full thyroid panel, not just the TSH (which actually tests your Thyroid Stimulating Hormone, which comes from your pituitary, and doesn't check your Thyroid levels at all). The TSH is a pretty good test that picks up a lot of thyroid problems, but there are times that it misses things. You could also ask to have your adrenal system checked out, though I'm not sure what tests are available for that.

One other thing that jumped into my mind as I read your post is: have you been checked for sleep disorders? Apnea especially can cause that "never rested" feeling. Ask your husband to stay awake for a while after you go to sleep and listen to your breathing. If you breathing is stopping longer than the normal exhale/inhale pattern, you probably should try to get a referral to a sleep disorder center. Sleep disorders can also cause brain fog/exhaustion/weight gain.

I know these possibilities don't have a TON to do with celiac, but you've had lots of great celiac advice from everyone else. I think that these possibilities are definitely worth looking into, considering the symptoms you've mentioned. Best wishes in solving the problems you are still having!

[jknnej]

Have you been checked for anxiety as well? Most people here probably know that I always post this when someone hasn't been feeling well for a long time. Many times it's anxiety combined with some other health issue.

I ask because I was one of the people who went gluten-free but didn't feel better; in fact,

I got worse. I had nausea, dizziness, eye problems, headaches, fatigue, muscle aches, diarrhea, and a host of other issues. When my dr. suggested anxiety I was sure he was crazy because I am never anxious and have never experienced a panic attack or anything even related to one.

But I tried the anti-depressant he gave me and every single symptom disappeared....

so, if you haven't tried it yet, you may want to consider trying treatment for anxiety if your dr. thinks it's plausible. It made a world of difference for me.

[Guest Kathy Ann]

Thanks for all the kind welcomings to the site and great suggestions!

If I've learned anything, it's that we are all very different and we are all very alike!

I have had my thyroid checked many times, very thoroughly by regular doctors and alternative ones using all the latest cutting edge testing methods. Everyone says nothing is wrong with my thyroid even though it sure looks like it sometimes. I do have several relatives with definite thyroid issues.

I am taking many, many gluten and other allergy-free supplements, including B12 and magnesium, raw adrenal, potassium, calcium, etc. etc. It's hard to know whether I'm assimilating them, though. That's the problem.

My iron levels have continually checked out OK so I don't think I'm clinically anemic. I AM definitely low in some nutritional areas, though, according to blood tests and thus is the reason for so many supplements.

Amazing that you would bring up anxiety. I have had panic for several years. But it doesn't seem to be emotional. It SEEMS physical. IF I really am celiac, it would explain a TON of things. I don't doubt that the celiac could cause enough malnutrition to starve anybody's nervous system and easily cause problems. Don't know which came first, the cart or the horse.

As careful as I am, I am thinking that I might be a super sensitive gluten person and am just going to have to be hyper about this. My family is in for a rude awakening, I'm afraid.

[daffadilly]

Kathy, welcome this is a great board. I have some suggestions, some are repeats of what others have said.

Take B12, everyday for the rest of your life.

Check your vitamins and meds & make sure they are all gluten free. & I would maybe even suggest cutting some of the out for a bit to see how you do, if you are not anemic, the iron pills can wait a month or two.

Read the book Dangerous Grains

THROW the Wheat Flour Canister in the trash. You are surely getting cross contamination. even if your kitchen is not totally gluten-free, you cannot have flour in the house - that stuff gets in the air, on the countertops, in the air filters...

Someone butters their toast then touches the refrigerator handle - you come along after them open the refrig then eat something - you got cross contamination. It will make me sick everytime. & I was sure that I would never be like that

Next & I know this is harsh but DO NOT eat any of those gluten free grains, they are all cross contaminated IMO. Plus at your age and level of illness you describe you should not be introducing any of that stuff for at least a year after going gluten-free. Those things should be for treats only. & geez, I cannot believe I am typing this, as I used to eat the usual home made cookies, pies, cakes etc. But, I do not eat that way anymore.

Good Luck

[Guest Kathy Ann]

It is so hard to think that we could be THAT sensitive. Your advice is wise. Never thought about the refrigerator handle. Can you imagine what's on there?!

I've often considered going really clean and stopping ALL the grains. Rice has been a nice bridge from normalcy for me. I've used all the fun homemade gluten-free concoctions I've been making as serious comfort food. But maybe it's the key. Since I can't have dairy or eggs either, grain-free leaves me with meat, vegetables, fruits and some nuts. Whew! That's tough. But I'll strongly consider trying your suggestion.

Thanks!

[Ursa Major]

Kathy Ann, I think it would be wise to cut out rice to see if that helps. Most people think that rice is this hypoallergenic food that can't do harm. But there are actually lots of people who can't tolerate rice, me included. When I eat rice in any form, it will give me practically the same symptoms as gluten. I know it probably isn't harming my villi, but it sure makes me awfully sick.

[daffadilly]

Ursula sorry you have a problem with rice. Hang it there it could change in the future, or have you had a problem with it your whole life? I can eat rice, but I wash it in three rinse waters first before cooking it.

Kathy Ann, I hope you do give up the grains, at least until you are all healthy & energetic, then you can add them back one by one if you want to - or at least a couple to have something like banana bread once in a while. Really that stuff is not good for you. There is always that peanut butter cookie recipe, that you can add dairy free chocolate chips to - is there anyone that does not know the one? 1 cup of peanut butter, 1 cup of brown sugar, 1 egg, 1 teaspoon vanilla, (chocolate chips optional), drop on parchment paper, bake at 350 degrees,

For recipes check out the Specific Carbohydrate diet web site

I would give up rice last if you have to at all. One thing about only eating fruits, meat, veggies & nuts - you can usually tell what makes you sick. I do fine on that diet, & I cannot eat dairy, beef, potatoes, or any grains except corn & rice.

I recently had someone tell me that the reason that I could not eat canned corn was that they put sulfites in it. I have not checked it out, just repeating what someone told me. I am allergic to sulphur & have a problem with sulfites & nitrites etc. I do eat fresh corn on the cob & I cannot remember if it was on this board that someone had a child that had a problem with corn but could also eat fresh corn on the cob. I can also have corn meal, although I do not eat it that often.

[SylvanArrow]

I'm not sure if I can add anything to what's already been said, but I'd strongly suggest reading Elaine Gottschall's "Breaking the Vicious Cycle" if you haven't yet. It's not quite as strict as the Paleo diet and it takes into account the need to add probiotics (homemade yogurt done long enough to remove lactose) if you're dealing with leaky gut issues (which you probably are and which is probably how you've developed all these allergies--it was the same with me). It also gives you the hope that a couple years down the line, you may be able to eat some of your favorite foods again (once your gut heals fully), in moderation of course.