Need Help Figuring Out My Gluten (etc.!) Intolerances

[ABQscientist]

Hello,

I am a 51yr-old research analyst/scientist and on disability 30 months due to psychiatric disorders of the depression/anxiety/OCPD variety that led to me burn out twice in my career and after the year as beach bum in HI and then coming back to work full time for 30 months, my condition degenerated so badly that i did a lot of self-medicating that included a year of 2 IU/day HGH initialy prescribed by a remote "anti-aging doctor." And there were other things i did as a result of feeling that i was ready to die for "double depression" that all the king's psychiatrists and all the king's internists could not help me with.

So why am i here asking for dietary help/diagnostic assistance? Well, after getting Medicare and seeing new doctors every month, the first thing i found out from a D.O. that pointed to a nutritional problem was my extremely low vitamin D3 levels despite having daily sun exposure in a city with annual solar radiation as high as Honolulu's. While taking just the usual high-end multivitamin every day, my 25OH D3 level was 19 ng/ml ("insufficiency"). A month later i was diagnosed as "borderline" Type 2 diabetic with a single elevated fasting blood glucose level of 136. Long story short, when the P.A. didn't order a second fasxting glucose for confirmation and told me intead that i'm not diabetic because i "don't look like one" i found a nurse practitioner in an urgent care who had no problem putting me on metformin based on the history and how my depression had lifted after being on 7 days of self-prescribed metformin and an annotated graph of my blood sugars measured with home testing device and my notes saying that whenever the sugar was at 170 or higher my depression worsened to being unbearable and that a week on metformin 500 mg BID had me feeling "normal" and with no suicidal thoughts. She agreed with me that given the single high BS level and my notes showing that sugar levels corelate with my mood problems, she agred that the potential benefits outweighed the risks and she agreed to give me two months at a time of metformin until i could find a physician to be my PCP after "firing" that D.O. who did not overrule his P.A. (who refused to write me metformin because it "came in too high a dose" and i refused his offer of a tiny dose of Glypizide (sulfonylurea) and after the N.P. had me on metformin which relieved my mood so dramatically, the couldn't do the second confirmatory diabetes diagnosis with a second fasting glucose measured in the lab (though there were plenty of high readings on my meter, which showed a very strong "dawn effect" that would bring my sugar up to 170 by 11 AM if i was stressed and failed to eat. Yup. It would climb from 100-110 on waking all the way up to 170 with no food. Stress was making my liver dump sugar.

So what does this have to do with celiac? Well, the first thing i did to create a diabetic diet was to cut out all bread products, primarily wheat. A few months later i saw a new PCP internal medicine who gave me a lab order for "celiac disease" blood test of unspecified (in words) type that i never filled because he did not even tell me what celiac disease was and made no mention of gluten in my diet and it was al based on my description of the psychiatric problems, Vit. D. insufficiency, and my description of bowel behavior. He was gruff and i walked out of there never wanting to see him again so found a new PCP who didn't mention celiac or any food intolerance.

OK, so my situation was that i had inadvertently put myself on a low-wheat diet and my digestion improved dramatically. But then a local shop starting making falafel sandwiches and i was eating pita bread 3 times a week and on top of that a store had some 100% wheat breakfast cereal on sale so i bought 4 lbs of it because i didn't think i had a wheat intolerance. WOW! I was so weak i could not get out of the house and my depression and bowel problems were worse than ever. Positive challenge was very decisive! I am now resigned to NO WHEAT. Never again!

So now that i can see speciaists and have labs done for $20/visit, i went to a GI disease doctor who tsted me for celiac based on history and here are the results i managed to get over the phone because they would not mail them to me. "IGA"=190 [68-378] and "ITG"=3 [<19]. So the nurse told me i did not have celiac disease and their GI center did not order food allergy tests. So i found an allergist who did 70 skin-prick food allergy tests on my back and wheat was negative, as well as all the other foods (corn, mostly) that I KNOW i cannot tolerate.

The allergist explained to me that food intolerance is "poorly understood" but he gave me a diet to follow and instructed me to keep a food diary with notes on how foods affected my mood and bowels.

That was last Monday!

Oh. A second Vitamin D3 test done after 6 months of supplementation with 2000 unit tablets taken ~3times a week only raised my D3 levels to 29 [>40], so even with all the sun here and the supplements i had Vit. D insuffiency.

The allergist is the only doctor i've found who seems to realy believe that my psychiatric problems (and disability) appear (based on my history) are the result of a food intolerance for which there are no tests he can do for me. All he offered me was to continue doing what i've been doing all my life in trying to figure out what foods i can't tolerate and then avoid them.

I can't deal with this. The other day after having no tomato in my diet for months, i used pure tomato paste on gluten-fre rice noodles and feld a return of my negative symptoms. So no i can add tomato to my list of wheat and corn.

The depression that results from eating a food i can't tolerate is so bad that i am unwilling to repeat the test with a "challenge" for confirmation.

So i'm stuck eating a diet of very limited items that i know i can tolerate and am extremely fearful of experimenting to find new ones, because as happened with the tomato, i found out by chance when trying to make the rice pasta palatable.

My PCP is not helpful at all, though i need tostay with him because he's helping me deal with the aftermath of one particualr type of self-medication i resorted to when i was so desperate for relief that it was a choice between suicide or a class of drugs that "mask" unhappiness ...if you know what i mean.

Can anyone give me some advice? I'm in Albuquerque, NM and nobody replied to my first post asking if anyone knew of a doctor here who would order "the" genetic test for celiac instead of (orin combo with) the antibody tests.

Judging from the signatiure blocks on posts here, a lot of people who can't tolerate gluten have tested negative for the antibodies, yet they maintain gluten-free diets.

The allergist suggested that if i can't tolerate two "grains" (wheat and corn) i might be sensitive to other grains and may need to be on a grain-free diet. But i seem to do well as long as i stick to oats, rice, and buckwheat. I won't eat barley because of the gluten in it.

Is there a better approach to finding the foods that (inadvertently) make me feel suicidal?

I'm afraid to eat new foods and am losing weight. If the psychiatric symptoms worsen, i could end up starving to death. Yes, that sounds like i'm being a dram queen, but it'scorossed my mind.

DOes anyone else here suffer psychiatric problems that are alleviated when they avoid certain foods?

Thanks forany help!

D.

[Jestgar]

I think you'll find that a lot of people here have psych issues related to food, myself included.

The genetic test will only tell you your genes, not if you have any problems. It's interesting, but not particularly informative.

I would suggest that your interests would be better served by finding a really good naturopath. It sounds like you need to do a very controlled elimination diet with careful notation of any effects of the food you eat. This isn't a quick fix. If you really want to get control of your health you have to make a commitment to a restrictive elimination diet, with challenges.

You also want to keep in mind that you won't have a positive allergy response to foods you aren't eating, and that food allergy testing is not very reliable. The only way to know, is to do an elimination diet.

And finally,

stop, and take a deep breath. You can do this. And we are here for you to lean on.

[shayesmom]

Is there a better approach to finding the foods that (inadvertently) make me feel suicidal?

I'm afraid to eat new foods and am losing weight. If the psychiatric symptoms worsen, i could end up starving to death. Yes, that sounds like i'm being a dram queen, but it'scorossed my mind.

DOes anyone else here suffer psychiatric problems that are alleviated when they avoid certain foods?

Thanks forany help!

D.

I agree with Jestgar on this. A naturopath or homeopath may be able to help you more than conventional doctors at this point. If there's one thing the alternative fields "get", it is the role food intolerance plays in health (or disease depending on your perspective).

I can tell you what our homeopath recommends to all his patients suffering from everything from psychiatric symptoms to full-blown cancer. So here's the list:

1) Avoid all refined flours and gluten-containing grains (that means oats too unless they are certified gluten-free.

2) Avoid all refined sugar (raw honey, agave nectar, pure maple syrup and stevia are allowed in moderation)

3) Avoid all hydrogenated oils and trans fat (saturated fats such as coconut oil are highly recommended as an alternative).

4) Avoid all caffeine, tobacco, alcohol.

5) Avoid all processed meats.

6) Avoid all artificial sweeteners, food colorings, artificial flavors.

7) Avoid all dairy products

8) Limit citrus (like commercial orange juice)

From there, if you are experiencing food intolerances, you need to go a bit further as to foods to eliminate.

1) Eliminate gluten and all forms of dairy (though some will okay raw dairy).

2) Eliminate soy.

3) Eliminate nightshades (potato, tomato, eggplant, peppers (not black pepper)

4) Eliminate corn.

If problems persist, eliminate the other top allergens (peanut, egg, shellfish, etc.)

In the meantime, our homeopath also recommends that you drink this mix every day: 8 oz of purified water with the juice of one organic lemon, 1 tsp pure maple syrup and a pinch of cayenne (the cayenne may seem counterintuitive when you're avoiding nightshades but most patients tolerate this).

Some homeopaths/naturopaths are able to test for food intolerance so that they can offset how overwhelming this elimination diet is. And many can also test for heavy metal toxicity which can play a big role in multiple food intolerance (as it can affect enzyme and detoxification pathways in the body). You may want to also start reading the OMG thread on this site. There is a lot of information in there which may be of great help. The trouble is...the darn thing is over 1900 pages long. So plan on it taking a while!

Good luck at finding answers. You've come to a great place to figure these issues out.

[ABQscientist]

Thank You both for your helpful replies. Unfortunately, while your suggestions could be a path to a complete solution for many in similar situations, in my case I really do need to find a GI doctor to help me figure out the (many) food I cann't tolerate.

I've known for decades that I cannot tolerate corn and only in the past year (since dietray changes on diabetes diagnosis) has it even crossed my mind that I can't tolerate wheat of gluten, but largely removing gluten inadvertently made me sensitive enough (because of not being constantly poisoned by it) to realize that I cannot tolerate wheat or wheat products.

But my reactions to foods are nonreproducible and as per my original post, the food-related anxieties that seem to be CAUSED by multiple food intolerances is making it impossible to eat anything except for a very small number of "safe" food items that do not make up a healthy balanced diet because the set is so small.

If a person is intolerant of more than just gluten, most people can do a journal/rotation/elimination/challenge process to expand a list, but in my case because of the severe psychiatric effcets of eating a food that "diagrees" with me, I'm afraid to try new foods, am afraid to ever do a negative challenge for confirm a food sensitivity, and there is the possibility that I have digestive problems that are either completely different from (or, more likely) a combination of ... more than one cause.

My PCP is aware of the journal article posted here saying that failure of gluten elimination to rsolve digestive problems can sometimes be caused by small bowel overgrowth by bacteri or mycoplasma.

But he is totaly averse to trying to diagnose my problem and the best I can do here in the way of doctors and food intolerance is find one who ordered an antibody test for "celiac disease" and told me that the test was negative but that I should still avoid gluten regardless.

An allergist did 70 food skin pricks on my back and the very few positive responses made practically no sense aside from showing allergy to corn, which I've known since being a teenage that I cannot tolerate.

Nonetheless, there are MANY foods that make me feel just as sick as wheat does, so badly that the idea of a negative challenge to confirm a sensitivity is too frighetning to contemplate.

I am pretty sure that I need a real GI doctor to help me figure out all the things i CAN'T eat ... and then I'll need a nutritionist to figure out a way to make a sensible diet out of them.

I have had no luck whatsoever in finding a GI doctor, and my sensitivities are so numerous and often nonreproducible that I seem to have a GI disease more complex than

"simple" food insensitivities where once I knew what I can't eat, all I'd have to do is avoid all those foods.

If only things were that simple!

D.

P.S. I made another post here today with additional information and a link to it is not posted here. You can find it by clicking on my username.

[CeliBelli]

ABQ,

I was diagnosed in December at the age of 44 and years of health problems. Like others, I can attest to the mental issues that go hand in hand with Celiac. Here are a few thoughts that I hope may be of help.

First, the reason you may have tested negative on the antibody test is because you'd already eliminated the most prominent sources of gluten from your diet for a certain duration. This could have been enough to throw the antibody test off. I agree that you should seek out the genetics test. Realize, too, that not all celiac tests are of equal quality. Prometheus is one of the very best, and I can recommend it. They also have a more advanced, very high sensitivity antibody test that is highly recommended. I also agree that you need to find a good GI with experience treating Celiac. Given your history, you may wish to ask for them to do an endoscopy and colonoscopy, which is the gold standard for diagnosing Celiac.

Since you are reacting to gluten-free foods, you should know that it is not uncommon for people with Celiac Disease to also be sensitive to soy, and, like gluten, it hides everywhere. When I went gluten-free, I was also taken off dairy, so I tried substituting soy milk. I rapidly found I have just as violent a reaction against soy as I do against gluten. Now, I eliminate both gluten and soy, and severely limit dairy, and am improving rapidly.

One way I am coping with these restrictions is to avoid most processed foods and eat very elementally, and when I do eat processed foods I read labels meticulously to avoid even foods processed on the same equipment as wheat, rye, barley or soy to avoid cross contamination.

Know that if you do have Celiac Disease, it will take your gut some time to heal. I was told a year to two years. It will also take the rest of your body and mind time to heal, too. Accepting that and embracing that helps me considerably to ease the frustration and despair of dealing with the challenges of chronic illness.

That and large doses of a cross section of gluten-free vitamins. You should find a good, gluten-free under-the-tongue B-12 supplement, which will help repair your neurological system. Also, iron, E, C, calcium & magnesium, the works. If you pee clear, you're not getting enough through your gut and into your blood stream. Just remember to space them all out through the day so they don't upset your stomach.

Don't give up, and don't give in. You will get through this. Keep looking for a good doctor. If you can, you may even want to contact the Mayo facility in Arizona to see if they can help you, or recommend a doctor in your area.

Good luck, and hang in there!

CeliBelli

[ABQscientist]

Thank You 'CeliBelli',

I saw my PCP yesterday and he ordered a Barium series both as a screen for colon cancer and to better understand what is going on in my gut.

When an allergist did the 70 skin-prick tests on me he got positive results ("3/5" or "4/5" whelts) for none of the foods that I KNOW I cannot tolerate and he told me that skin prick testing for foods often has no usefulness but it's the only thing he could do.

I've questioned my PCP twice in the hope that there's something like a marker for GI inflammation like C-reactive protein and after me pestering him twice to order the test (which could be justified based on my borderline-high cholersterol and me refusing statins ... and he finally agreed to it but that ended up being forgotten when i proposed to him a barium enema series instead of a colonoscopy ... because i told PCP that i would not go back to that "gastroenterologist" who had absolutelyu no interest whatsoever isn what was going into my mouth or the form in which it would (eventually) leave my body. PCP said he could order the barium series and that it would provide more information on by GI function than a series of static pictures from a colon camera or biopsy slivers. Something inside me is just not working as it should and my PCP is the only doctor i've found who thinks it should be looked into. Yes, i know that a baroum series gives no biopsy tissues for examination, but it will tell him what those two valves are doing at the beginning and end of my colon, because the seem to become easily stuck in the closed position and that behavior seems to be triggered by the ingestion of MANY different foods, with sometimes a dramatic reaction and other times no reaction to the same foods which makes it pretty much useless to do the food diary thing because the results are so variable and inconsistent.

PCP told me of a syndrome that he said is poorly understood where inconsistent food intolerance is the result of bacterial overgrowth in the small intestine, which some docs test for with a breath test and ohers try to find with a sample taken by endoscope from upper end. I've even seen mention of doctors giving antibiotics to "knock down" small intest overgrowth without any more reason than a hunch, either because they don't know of or believe in the breath test, or else they think that risk and cost and reliability of endoscopic biopsy of small intestine can cause more harm and a lot more inconvenience than a short trial of an antibiotic targeting the upper GI.

I don't know if i am celiac, beause i have sometimes eaten wheat products without always suffering the same terrible symptoms that are always caused by corn products. If I get sick 99.9% of the time from corn, it's only about 50-90% of the time from wheat/gluten. Maybe when I avoid gluten for a substantial period those "antibodies" decrease, which would theoretically alow me tolerate smallamounts of gluten w/o triggering the extreme effects that corn ALWAYS cuases me.

It's just so disappointing to find out that unless i fit neatly into that diagnostic box of celiac that there are some celiac sufferers who talk to me as if i'm making this up or that my story does not make sense. It's as if they (and some doctors too) think that gluten sensitivity is a yes/no with no grey area between the black and white.

The "GI doctor" i saw believed (falsely, it seems, according to much data here) that he could rule out inflammatory bowel disease with biopsy of my lower intes., but the tissue changes of celiac are in the upper GI, not the lower GI reachable with colonoscopy.

So you are right in saying that i i may need tubes pushed in from both ends, but right now until i can find a GI doctor who would be willing to treat food my food intolerance based on my reports (or any samples brought in to them, which none of them want to see) ... well, my problem is that if i can't find a GI doctor who treats food intolerance, PERIOD, then i refuse to let a person like that push tubes up inside me. If they don't believe my symptoms are real or worthy of any exploration, why should I let them push their tubes up me????

There ARE drugs that are used an antiinflamatories for the GI and there are also motility enhancers like Reglan. Just yesterday I showed my PCP some info i had found about Enulose and he gave me a scrip for it, but i just wish i had a doctor who seems to know more about GI disorders than i find out myself tell him or her. It's just so disappointing!!

It's just way to difficult for me figure out why I can sometimes tolerate some foods which other times make me violently ill.

I've been doing everything I can to try to find professional help from doctors but my PCP is uncomfortable trying any of the "esoteric" or experimental treatments and he doesn't knowanything about some of the diagnostic procedures (like breath tests) that some mention here as showing bacterial overcolonization of upper GI, and if he can't diagnose them he certainly won't try to treat them with treatments that are off-label and which he has no experience with.

I'm just totally baffled that in a metro area of over half million people with the only medical school in the state that there does not seem to be be a GI doctor here who can hel me figure out what is wrong with me and how it can be treated. I've seen scientific articles about the "bacterial overgrowth" theory of food intolerance, and it would go a long way towards explaining why I can sometines tolerate certain foods that other times make me very ill.

This is too difficult for me to do on my own. Should I look up what antibiotics are used to treat that bacterial overgrowth and try them myself? These days all it would take is an internet connection and a credit card and a mailbox. Why can't doctors help me with this?

If I was a purely mechanical device, then the same inputs should usually give the same results, but we're not machines, we're human beings with all sorts of adaptive feedback mechanisms.

Maybe some people (or most) have repeatable results and the same foods either are tolerable or intolerable. But what if the same inputs don't always result in the same results?

Bacterial overgrowth could maybe explain the inconsistent reactions to same foods, but my PCP is incapable of diagnosing it, much less treating it.

And there does not seem to be a gastroenterologist (or internist) in town here who will even listen to me for a minute because they all act like i'm a crazy hypochondriac.

How many people with fibromyalgia (or, earlier, lupus) have killed themselves because they could not find a doctor who believed they were ill and who wanted to help treat them? I think that there were many who died during the many years it took for conventional medicine to take their illnesses seriously.

I have no idea if my problem is some kind of food intolerance with an auto-immune component or it's something completely different, or a mixture of both.

Having the images from a barium study should at least narrow down the LOCATION of where the problem(s) are. And then maybe if they see some pathology in black and white they won't treat me as a hysterical hypochondriac.

Doctors kill so many people a year (~100,000 per year) from medical error that I need to have some trust in a doctor before they can push their tubes into me. And so far at least, there is no GI doctor here who treats me as anything but crazy.

agree with Jestgar on this. A naturopath or homeopath may be able to help you more than conventional doctors at this point. If there's one thing the alternative fields "get", it is the role food intolerance plays in health (or disease depending on your perspective).

I can tell you what our homeopath recommends to all his patients suffering from everything from psychiatric symptoms to full-blown cancer. So here's the list:

1) Avoid all refined flours and gluten-containing grains (that means oats too unless they are certified gluten-free.

2) Avoid all refined sugar (raw honey, agave nectar, pure maple syrup and stevia are allowed in moderation)

3) Avoid all hydrogenated oils and trans fat (saturated fats such as coconut oil are highly recommended as an alternative).

4) Avoid all caffeine, tobacco, alcohol.

5) Avoid all processed meats.

6) Avoid all artificial sweeteners, food colorings, artificial flavors.

7) Avoid all dairy products

8) Limit citrus (like commercial orange juice)

From there, if you are experiencing food intolerances, you need to go a bit further as to foods to eliminate.

1) Eliminate gluten and all forms of dairy (though some will okay raw dairy).

2) Eliminate soy.

3) Eliminate nightshades (potato, tomato, eggplant, peppers (not black pepper)

4) Eliminate corn.

If problems persist, eliminate the other top allergens (peanut, egg, shellfish, etc.)

In the meantime, our homeopath also recommends that you drink this mix every day: 8 oz of purified water with the juice of one organic lemon, 1 tsp pure maple syrup and a pinch of cayenne (the cayenne may seem counterintuitive when you're avoiding nightshades but most patients tolerate this).

Some homeopaths/naturopaths are able to test for food intolerance so that they can offset how overwhelming this elimination diet is. And many can also test for heavy metal toxicity which can play a big role in multiple food intolerance (as it can affect enzyme and detoxification pathways in the body). You may want to also start reading the OMG thread on this site. There is a lot of information in there which may be of great help. The trouble is...the darn thing is over 1900 pages long. So plan on it taking a while!

If i did not eat any of the things listed in the quote above, is there anything left?

Besides, like i keep saying, my food intolerances are NOT REPEATABLE. The same foods that can be tolerated some times are violently intolerated other times. So it would be just a huge waste of time and energy to proceed on the assumption that that challenge/elimination could help me find a safe diet.

Sure, there are some "naturopaths" and homeopathic physicians who think they can test for food intolerance by putting a sample on my belly and waiting vfor me to relax so they can pull my arm away from my torso and announce that they found something i can't tolerate. But all they're doing is a combination of playing "chicken" and arm wrestling. Nobody has ever published a peer-reviewed journal article that showed any value of the "muscle resistance testing" that seems less scientific than Haitian Voodoo or Santeria divination. I know a D.O. who thinks he can diagnose illness that way, but he'd do just as well with a coin toss, which might be even more "accurate" because it's completely random while the muscle testing method is inherently biased by the practitioner.

If there is anything of relevant value in that huge OMG thread, please post a link to at least one or two interesting posts or some search keywords. It seems like a monumental waste of time to blindly look through all through all those pages without even knowing what you think is relevant.

I know a quite a few acupuncturists here who have told me that the muscle testing thing has never been any help to them in diagnosis and the primary basis of homeopathy that increasined dilution equates to increased potency has no basis in physics. Yes, the Placebo Effect is real and it can be explained by science, so if homeopathic placebos are of value for some, then that's great and i'm happy for them. But placebos only work if the subject believes that they contain some active ingredient and in my case it's inconceivable that a "medicine" that contains only 10 atoms of ingredient is more powerful than one containing 100 atoms (and much more powerful than 100,000 atoms of same).

Is there anyone here who knows of a GI doctor in New Mexico who can help me?

[mushroom]

Like others above, I think you would do better with a naturopath. I have just consulted one here in Nevada and she agreed with me, now that I am gluten-, soy- , nightshade, caffeine- and lactose-free that I needed a GI panel test, to find out what is going on in my gut. This is being done by Diagnos-Techs in Washington state and checks for yeast overgrowth, pathogens, anything that should not be in your gut and which could be causing a lot of your symptoms. It consists of both stool and saliva samples. Alleopathic physicians know very little about nutrition, as you have found out, whereas naturopaths specialize in this area, and understand the importance of eliminating all dysbiosis in the gut before you can heal fully. If I were you I would definitely give it a try. All you have to lose is your ill health and about $235 for the test.

[RollingAlong]

check out the failsafe diet also. Don't worry, there's plenty to eat and it may help you

find a pattern to this.