What Did You Think Was Gluten Cc When It Actully Wasn't

[T.H.]

As it's pretty obvious from our rather spirited debating here, there are often a lot of opinions on what can be causing super-sensitivity or on what might be going on instead of super-sensitivity. So I thought, why don't we address that head on, yeah? Share our mistakes and our other problems with each other, and share how we figured out what the heck they were.

If nothing else, I think it's very helpful to read about each others' experiences, because it can sometimes help us to think of new ways to investigate our own problems, suggest new things to test for, etc...

So, in that spirit, here's a couple things I used to think were gluten, but no longer do, and how I figured it out.

1. Headaches from pesticides.

While I might get headaches along with my vertigo and gluten cc symptoms, it didn't seem like it always tracked together. At first I thought perhaps I was just not paying attention, or it was just inconsistent, but that it might still be related to my gluten reaction. But I'd have moderate headaches with moderate gluten cc symptoms sometimes, but also worse headaches with low-level gluten cc symptoms, or gluten cc symptoms without headaches at all.

After food journaling, I noticed the majority of my headaches were after I ate produce from farms that used conventional pesticides, whereas I could eat the same produce from organic farms without headaches.

I went organic and eliminated the headaches except after the ingestion of strawberries. And then I discovered that methyl bromide (a fumigant for the soil) can be used with both organic and conventional produce. After that, I tried both homegrown strawberries and found one small farmer that grew them without using methyl bromide, and I get no headaches at all from these.

At this point, after various reactions along this vein, I believe that my headaches are due to pesticides and chemicals, but not related to gluten.

2. Diarrhea, bloating, gut issues

I didn't have D before going gluten-free, but it developed soon after. I naturally assumed that this was gluten cc. Figured out that some people get a little more sensitive and just figured this was what was going on. I was missing something in my diet, some gluten cc was slipping in somewhere, maybe.

In the end, the gut trouble has turned out to be mild food allergies rather than gluten. I was tested for food allergies, and through that and food journaling, I dropped a number of foods, and my guts were dramatically improved. Through all the research on various foods, I found a few potential allergen cc issues and dropped those. Gut got even better. After avoiding these foods for a while, I get additional symptoms when the allergens are eaten - sore raspy throat, sometimes a swollen tongue, feel like I have the flu, exhaustion.

I do not, however, get any gut issues when I get what I now know are my typical glutening symptoms. Finding what seem to be safe sources for my allergens didn't change my reactions in the slightest, unlike the change in my glutened symptoms with safe produce. I also had a couple incidences where a less processed version of one of these allergens (so containing more of the protein) made my reaction significantly worse. So even though the gut is the glutened 'tell' for many celiacs, for me, it seems to be unrelated.

[burdee]

Non-Gluten Food Allergies:

After I was diagnosed with gluten (and casein) intolerance, I carefully eliminated all sources of those from my diet. However, when I tried to substitute soy products for my former dairy favorites, I again reacted with my familiar cramping intestinal pain, bloating and gas. So I eliminated soy, but I still had gut symptoms. I knew I wasn't getting any CC or unknown sources of my 3 allergens. So, rather than eliminate even more foods (since I knew I could be allergic to ANYTHING), I took the ELISA (blood) test for 100 commonly eaten foods. That diagnosed 2 more allergies (cane sugar and eggs) and explained why I got tachycardia and nausea after eating foods with cane sugar and got very sick after having flu shots (cultured in egg white). However, I STILL had gut symptoms. So I took another ELISA panel for herbs and spices, which diagnosed vanilla and nutmeg allergies. I never realized I was allergic to those. Nevertheless, I soon learned from accidental consumption that I reacted with my familiar 'food allergy' gut symptoms. I accidentally consumed some nutmeg in some apple cider (to which someone added nutmeg and didn't tell me till I'd drank a few swallows). I endured a week of pain after that. Then my favorite allergy free ice cream changed its recipe and added vanilla. Another week of food allergy reaction pain followed. So I'm certain that my ELISA test diagnoses are accurate.

Gut Bugs:

Although I eliminated my allergens, I still had occasional cramping pain, bloating and gas. So my ND gave me stool tests for intestinal bacteria, parasites and fungus (candida). Over the course of 4 years I was diagnosed with and treated for 8 different gut bugs (5 bacteria including C-diff, 2 parasites and 1 fungus (candida)). After 4 years of that, I found another doc who figured out why I was so susceptible to food born bacterial and fungal unfections.

Low Stomach Acid:

My new doc first tested my stomach acid production. That test showed my stomach very slowly produced a small amount of acid. That explained why I felt overly full after a small amount of food. Low stomach acid also allows food born bacteria (and other gut bugs) to go straight to my intestines and proliferate into bacterial overgrowth, etc.

Hashimoto's Thyroiditis:

My doc also tested my vitamin D level (which was abnormally low) and my thyroid hormones (which indicated Hashimoto's thyroiditis). Both Vitamin D and thyroid hormones help the immune system. Without adequate amounts of either, I easily got gut bugs and respiratory infections. Hashimoto's (hypothyroid) also explained why I had chronic constipation (rather than typical celiac diarrhea) even though I had other celiac indicators.

I no longer suffer from gut cramps, bloating, gas and/or constipation. However, I obsessively avoid all my diagnosed allergens. I'm glad I didn't keep blaming gluten CC for all my gut symptoms. I would have never tested for and been diagnosed with my other allergies, gut infections and Hashimoto's thyroiditis. I only wish more celiacs, who have continuing symptoms after eliminating gluten, would consider other allergens, gut bugs, and/or other autoimmune diseases which cause their symptoms.

[Pac]

I was suspecting cc in rice flour and pretty much anything made with flour (bread, muffins..) the first year. Turned out rice gives me headaches much worse than gluten, some gluten symptoms like hypothyroid, brain fog, astma, bloating, and some extra symptoms like itchy rash. I think it doesn't cause depressions and ataxia.

I react to slightest rice cc and derivates like alcohol and glucose-fructose syrup.

Otherwise in most cases I have right the opposite experience. I 'cured' many additional food intolerances by eliminating gluten cc. Feeding the neighbours cat with gluten-free food as often as possible reduced my cat allergy too.

[dilettantesteph]

Good idea for a thread, Shauna.

I had problems with Kumquat skin. They came from a farmer whose other citrus I can eat without issues so I think it is Kumquat skin. Apparently they often cause problems. It was different from my standard gluten reaction since I had the GI issues without the blurred vision, irritability, joint pain etc.

I have also had some stomach bugs which gave me GI symptoms without the other symptoms and resolved without a change in diet.

It is useful in some ways to have a number of symptoms of a gluten reaction. It makes it unlikely that another source would produce the whole bunch of them too.

[IrishHeart]

It's funny you posted this because I just had this conversation with my doctor! I asked: "Why do I still feel like I am being glutened, when I KNOW I am not? I don't want to be paranoid about every damn morsel that goes into my mouth." He said: "Don't be. You're still healing. Things may just not sit well. Like dairy or soy or too much sugar. Give it time."

So true.

Here's what I notice as being "like a glutening"--but without the gluten head stupor--my first "tell" for gluten. Other food issues: soy, MSG, too much sugar at once, not enough protein with a carb, medications--these gave me trouble and I wondered if it was CC, even though it was not possible.

And, I have the worst time post-dental work. And sadly, despite my fastidious flossing/brushing/professional cleanings, I have problems as a result of celiac and so, I have had to have some serious work done this past year. UGH!

I know it is not gluten in the dental stuff because everything was checked.

It's a reaction to the dental molds and the anesthetics.

Just awful. Stomach upset, anxiety, "raciness" , depressive thinking, disrupted sleep and the inevitable D. For about a week.

It's like I am in a "histamine" response from time to time, yet all kinds of testing (IgE, IgG) revealed nothing--no allergies or intolerances--except a sensitivity to soy.

So, I asked my GI doc--my new guy is so " celiac-savvy" --Why do I feel like I am "speeding my brains out?" and he said: "Well, think about it. Your entire central nervous system has been on hyper-overdrive for years with unDxed celiac disease. It's still trying to calm down. It will can easily be provoked by anything that tweaks it, like novocaine or medications."

(This is why I do NOT take any meds--every single one I try for the chronic pain/nerve pain makes me sick as a dog. bummer)

So, I just double dose probiotics and drink a lot of water after something makes me feel "wonky" or "off" and ride it out. It passes. I hope for it all to dissipate as I heal.

[T.H.]

IrishHeart,

You don't have any issues with corn, do you? One thing that got me a couple times at the dentist was, we think, the added cornstarch to the inside of their latex gloves. I don't have any other issues with latex, but when we went to powder free, latex free gloves, I didn't have the same issues anymore.

Another odd dentist question - do you know what temp the dentist's autoclave goes up to? Some autoclaves are less than 500F (usually older ones, if I remember right). If the instruments are older or haven't been resharpened recently, so they have a few nicks or scratches on them, then there can be traces of gluten on the instruments even after autoclaving.

There is also a really new type of sterilization that is UV based, so after the instruments are washed, they get high levels of UV, which destroys pathogens but not proteins.

This doesn't really seem likely for you, I wouldn't think, otherwise I'd imagine it might be a periodic issue rather than one that happens every time, you know? But thought I'd pass on the issue in case it might be part of the problem. My dentist actually mentioned this to me once I started having food issues, because he'd made sure his office got the higher heat autoclaves so all the proteins would be destroyed and it would be safe for those with food allergies.

[IrishHeart]

No, corn and I are fine!

I am sure it's the DRUGS. Happens every darn time.

I can ask my dentist, but I doubt it. He already shakes his head at how sensitive I am about drugs. He worries about me after every procedure, calling me to make sure I am all right. The periodontist/TMJ specialist, however, states with skepticism that he "has never met anyone like me before" (and he has other patients with celiac) and that my pain level is so high that he wonders how I do not lay in bed every day crying. In other words, how am I out and functioning if I say my pain is that bad...(WTF? I am not lying) I tell him I do cry and then, I get on with my day. I have not spent a single day in bed, despite the pain and illness I have had for 4 years. (jerks abound in the "medical world")

I have had other medical professionals doubt my level of pain and my sensitivity and my over-the-top reactions to drugs. More than once I have heard :

"In my 30 years experience, no one has ever had this reaction..." blah blah blah.. and my answer is always the same...

With a smile, I simply say:

"well, I guess I am your first! "

No one "gets it".....celiac can cause so many problems, but no one gets it unless they LIVE it. Hell, I would not have believed half the stuff that happened to me had I not lived it....!

I have to write a book....

[mushroom]

I know it is not gluten in the dental stuff because everything was checked.

It's a reaction to the dental molds and the anesthetics.

Did you know that they add epinephrine to the lidocaine as a vasoconstrictor? It gives me the shakes so I ask my dentist for the lidocaine that does not have it.

[IrishHeart]

Did you know that they add epinephrine to the lidocaine as a vasoconstrictor? It gives me the shakes so I ask my dentist for the lidocaine that does not have it.

yes, thanks Shroomie!...I meant to clarify it is the epinephrine that causes my heart to race, etc. But ANY "CAINE" does me in....

(I had lidocaine injections once for the painful trigger points I have in my neck and back muscles and oh man, I was up all night, "speeding" ) Prolocaine?...yikes.

He tried one injection for the dental work without the epinephrine and although I did not get the rush and the shakes and shivers, I still had the "after effects". The shorter-acting no-epinephrine anesthetics are worse because he has to keep giving me MORE.. oh boy MORE needles.... argh....the whole ordeal sucks.

Fortunately, I am almost done....whew!

[CarolinaKip]

I went corn free and soy free. It wasn't until I went soy free, that I had a low pain day. When that happened, I asked myself "what did I do differently today" I didn't use my using Burts Bees hcapstick that day. It has soybean oil in it. I stopped that and all soy and have some pretty good days. However, I think I have a hard time still digesting raw veggies and I have to stay away from apples and pears. I have since added in some popcorn here and there and do okay with it. Corn sryup still nails me. I experimented with a low oxilate diet, then whole food diet.

[gary'sgirl]

I went corn free and soy free. It wasn't until I went soy free, that I had a low pain day. When that happened, I asked myself "what did I do differently today" I didn't use my using Burts Bees hcapstick that day. It has soybean oil in it. I stopped that and all soy and have some pretty good days. However, I think I have a hard time still digesting raw veggies and I have to stay away from apples and pears. I have since added in some popcorn here and there and do okay with it. Corn sryup still nails me. I experimented with a low oxilate diet, then whole food diet.

It kind of sounds like you could be having some trouble with fructose. You should check into it and see if it makes sense with the foods you know you have trouble with.