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Newbie And Multiple Food Intolerances


CeliacInSanDiego

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CeliacInSanDiego Apprentice

Hi all,

I am new to this website and new to celiac disease. I was diagnosed April 25, 2006 and have been gluten-free since then. Upon initially going gluten-free, my symptoms got MUCH worse. My main symptoms are 1) aphthus ulcers inside my mouth with a whole mouth burning sensation, like I rinsed with acid and 2) arthritic pain - it moves from joint to joint over hours/days. Anyway, with my switch to gluten-free, I was eating a lot more corn. In this evolving process of figuring this out, I am keeping a food and syptom diary and am finding that I am sensitive to almost all foods! It is simpler to write what I can eat, than what I cannot.

I can eat:

unseasoned animal meats (seafood, poultry, beef) - I used to border on vegetarian, so this is a huge change!

greens (like spinach, etc)

avocado

broccoli and that family (brussel sprouts, cabbage)

asparagus

apples

prunes

celery

onion

I can rotate:

apricots, dates, cranberries, olives, hearts of palm, water chesnuts, and some others

I cannot eat:

any grain (no rice, corn, quinoa, etc), legumes (including soy), mangos, citrus, tomatos, squash, peppers, yams, chocolate, nuts, seeds, kiwi, pineapple, banana, pear, etc.

This continues to evolve daily as I tease out the details of it. And I. obviously, haven't tried every food. Dairy and egg are still unclear. If I react to a food it kicks up all this inflammation and it takes a while to settle down the body.

Anyway, I am really down about this. I am relieved to see on this site that I am not the only one with multiple sensitivities, though.

In people's experience, do they stay sensitive to all of their "intolerant" foods, or do they get some back? I guess that in the back of my mind, I am hoping that I can survive eating cardboard for a while until things calm down, then I'll be able to go back to eating a more varied diet.

Rachel


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kabowman Explorer

I hate to be a downer but mine have progressed, not gotten better. Smaller and smaller amounts make me sick, even now, years later.

Keep trying. I had a problem with some rice but not others. I have problems with some nuts, not others, etc. BUT my system, once it gets out of whack, can take a while to get back to normal (well, normal for us) and then I can re-test foods again.

Most of my foods are plain meat, plain veggies, plain potatoes, plain rice with the occasional BBQ sauce - homemade of course - and chebe bread. And everything I make has garlic. Of course, before I had all my problems, all my food had garlic then too.

I found I have problems with fatty meats so I buy very lean meat, as much as possible. And even then, I have to rotate my meat - don't know why, I can eat chicken days in a row as long as it was cooked differently. Don't know why...

Ursa Major Collaborator

Hi Rachel, and welcome to this board. You sound like you may have the same intolerances I have. To find out more, check the links in my signature on lectins and salicylates. If you read the information it will be easier to see what you need to test for, and will tell you how to do it.

And it is possible that you will be able to have some of those things again in a few months, but there is no guarantee.

jerseyangel Proficient

Hi Rachel--Welcome! Your sensitivites sound similar to mine. It has taken me 6 months to figure all of them out. I eat meat, poultry, veggies, fruits (not citrus), olive oil, dark chocolate and water. I do use sugar--but try to limit that. I have been gluten-free for 1 year (today!) and after 4 months or so began to have trouble with the additional intolerances. It was like I was back to square one! I honestly don't know how long we need to be off all of the problem foods--I plan to stay off them for a year, and then maybe try a few things one at a time. I'm not in a huge hurry--this is the best I've felt in a long time. It's restrictive, but if it's what I need to do, I will. I'm kind of figuring it all out as I go along. You are in good company! :D

CeliacInSanDiego Apprentice
I hate to be a downer but mine have progressed, not gotten better. Smaller and smaller amounts make me sick, even now, years later.

Keep trying. I had a problem with some rice but not others. I have problems with some nuts, not others, etc. BUT my system, once it gets out of whack, can take a while to get back to normal (well, normal for us) and then I can re-test foods again.

Most of my foods are plain meat, plain veggies, plain potatoes, plain rice with the occasional BBQ sauce - homemade of course - and chebe bread. And everything I make has garlic. Of course, before I had all my problems, all my food had garlic then too.

I found I have problems with fatty meats so I buy very lean meat, as much as possible. And even then, I have to rotate my meat - don't know why, I can eat chicken days in a row as long as it was cooked differently. Don't know why...

Yes, that isn't happy news, but thanks for the input. Do you think that the continued progression of your issues means that there is something else out there still sensitizing you? Or does that seem to be how most people go?

What is the general understanding of why we are sensitized to so many things? My understanding is: the celiac disease causes destruction of the normal intestinal barrier. So, all sorts of antigens can get across into the bloodstream. Then, we get sensitized to things that our immune system never should have even seen in the first place. But it is not a true "allergy", right?

I used to put garlic in most of my cooking, too. But, alas, garlic is no more for me.

:(

Hi Rachel, and welcome to this board. You sound like you may have the same intolerances I have. To find out more, check the links in my signature on lectins and salicylates. If you read the information it will be easier to see what you need to test for, and will tell you how to do it.

And it is possible that you will be able to have some of those things again in a few months, but there is no guarantee.

Thank you. I found the lectics link especially interesting.

Hi Rachel--Welcome! Your sensitivites sound similar to mine. It has taken me 6 months to figure all of them out. I eat meat, poultry, veggies, fruits (not citrus), olive oil, dark chocolate and water. I do use sugar--but try to limit that. I have been gluten-free for 1 year (today!) and after 4 months or so began to have trouble with the additional intolerances. It was like I was back to square one! I honestly don't know how long we need to be off all of the problem foods--I plan to stay off them for a year, and then maybe try a few things one at a time. I'm not in a huge hurry--this is the best I've felt in a long time. It's restrictive, but if it's what I need to do, I will. I'm kind of figuring it all out as I go along. You are in good company! :D

Yes, our intolerances do sound unfortunately similar. What symptoms were you having? How long did they take to get better?

jerseyangel Proficient

My intolerance symptoms varied, depending on what foods I ate. Tapioca gives me an almost immediate reaction, similar to gluten. Soy gives me GI problems and terrible gas several hours after eating. Legumes were the difficult ones to uncover--I ate them often and always seemed to have an underlying feeling of impending D. Grains also give me GI issues, skin problems and anxiety. I have been off dairy for longer than gluten--dairy bloats me up--my face looks very different now than back when I ate dairy. It took a long time to figure all of this out. I actually felt better almost immediately after cutting them all out. It was kind of one step at a time--the last to go were the legumes--and bingo! :D

drannesimmons Newbie

There was a generic "leaky gut syndrome" diagnosis used in years past that would account fot the permeability of damaged intestines and reactions of substances that normally are contained in the intestines. It is my understanding that over time, as intestines normalize with gluten-free diet, the leakage of other substances our bodies may be interpreting as foreign [and attacking, causing our many different and rotating symptoms] will cease.

The advice I was given years ago was to eat plain brown rice with ghee (butter product from health food store that does not burn and is not casien/dairy reactive), and plain broiled or boiled white meats, non-iodized salt, bottled or filtered (high quality ceramic filter) water, leafy green vegetables, green beans, English peas, carrots, cauliflower, apples, bananas, grapes. There may have been a few other approved foods. This was to be followed STRICTLY for 6 months, and then foods were to be introduced individually, one a week, and a food diary was to be kept.

Many foods I had high, medium, and low reactions to before this 6 month elimination period were tolerated in rotation. When pollen counts were up, less tolerance.

Too bad my dermatitis herpetiformis was not diagnosed for another 20 years.


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mouse Enthusiast

Most of mine are actually allergies. I react with having major breathing problems and have to go on Prednisone, besides using an epi-pen and oxygen. Once the prednisone kicks in, then I can quit the oxygen. Mine have gotten worse, at least in the corn dept. But, then I was so stupid as I knew I was allergic to corn and thought just staying away from corn itself, I would be able to keep my symtoms moderate. I just did not realize how corn is used in so many products. I am still learning. My soy allergy I watch very carefully and have for many years. I have no soy (or in any products) unless I go to PF Changs for dinner. That keeps my soy reaction to minimal breathing problems for just a couple of days. The dairy I avoid and have for many years.

When some people first go on the gluten-free diet, they find that they need to cut out all dairy for about 6 months until their small intestine heals. I gather that the small intestine reacts to dairy the same way that it reacts to gluten. After 6 months you can re-interduce the dairy into your diet. In my case that was not an option, but I had aleady been dairy free for so long due to my strong breathing reaction to it.

CeliacInSanDiego Apprentice
There was a generic "leaky gut syndrome" diagnosis used in years past that would account fot the permeability of damaged intestines and reactions of substances that normally are contained in the intestines. It is my understanding that over time, as intestines normalize with gluten-free diet, the leakage of other substances our bodies may be interpreting as foreign [and attacking, causing our many different and rotating symptoms] will cease.

The advice I was given years ago was to eat plain brown rice with ghee (butter product from health food store that does not burn and is not casien/dairy reactive), and plain broiled or boiled white meats, non-iodized salt, bottled or filtered (high quality ceramic filter) water, leafy green vegetables, green beans, English peas, carrots, cauliflower, apples, bananas, grapes. There may have been a few other approved foods. This was to be followed STRICTLY for 6 months, and then foods were to be introduced individually, one a week, and a food diary was to be kept.

Many foods I had high, medium, and low reactions to before this 6 month elimination period were tolerated in rotation. When pollen counts were up, less tolerance.

Too bad my dermatitis herpetiformis was not diagnosed for another 20 years.

So, if I am understanding you correctly, after following this strict elimination diet for 6 months, some of your sensitivities improved, but the "leakiness" of your gut did not cease totally, since you were still reacting to some of the previous foods. Correct? This has been what I've seen happen with my Mom, who has had celiac disease for >34 years. Why, do you think, that the leakiness persists? Do you think there are trace amounts of gluten in the diet continuing to irritate and cause leakiness? And, theoretically, Dermatitis Herpetiformis, should resolve with a gluten-free diet (like celiac disease), right? (Not that I say I believe that.) So why do you think that your Dermatitis Herpetiformis continued to be an issue for you? Was there continued gluten? Other things you were sensitive to?

It is a fascinating insight of yours to notice that the pollen count influences your food tolerance. I will have to watch that for myself, since I have seasonal allergies. Does your DH also flare with allergies? What else sets it off? My mom has DH that is worsened by swimming pools and non-cotton clothing, in addition to diet.

Thanks for the detailed info on your elimination diet. Do you recall if ghee tastes at all like butter? Would it be in the 'fridge section near the butter? I am interested in finding it, since I think I am able to rotate dairy and would REALLY like to preserve that food group.

CeliacInSanDiego Apprentice
Most of mine are actually allergies. I react with having major breathing problems and have to go on Prednisone, besides using an epi-pen and oxygen. Once the prednisone kicks in, then I can quit the oxygen. Mine have gotten worse, at least in the corn dept. But, then I was so stupid as I knew I was allergic to corn and thought just staying away from corn itself, I would be able to keep my symtoms moderate. I just did not realize how corn is used in so many products. I am still learning. My soy allergy I watch very carefully and have for many years. I have no soy (or in any products) unless I go to PF Changs for dinner. That keeps my soy reaction to minimal breathing problems for just a couple of days. The dairy I avoid and have for many years.

When some people first go on the gluten-free diet, they find that they need to cut out all dairy for about 6 months until their small intestine heals. I gather that the small intestine reacts to dairy the same way that it reacts to gluten. After 6 months you can re-interduce the dairy into your diet. In my case that was not an option, but I had aleady been dairy free for so long due to my strong breathing reaction to it.

Wow! Bad reactions!

The first week that I was going gluten-free and reading and re-reading every label in my kitchen, I recall thinking, "Gluten is bad enough, I am so grateful that I'm not intolerant to corn because corn is in EVERYTHING!" Turns out that I wasn't so lucky and really worsened my symptoms by eating more corn because I was, indeed, reacting to it. Even some of my supplements, like vitamins or probiotics, had "starch" (aka corn starch) and "maltodextrin" in it. I researched maltodextrin on the web and found that it is a processed corn starch. It is in a lot of things, including spices, vitamins, etc. I have eliminated it, too (I think).

Are you other corn reactive people also sensitive to maltodextrin? Or is it processed enough that it doesn't seem to be a problem?

Also, half of the prescriptions and OTC meds in my medicine cabinet have corn starch or maltodextrin in them. (In case you other corn-allergic foks haven't checked this, here's what I did: I called my pharmacist and had her set aside the package inserts on my prescriptions so that I could read them over. Near the top of the package insert it lists the active ingredient, then the "other ingredients" - that was where the starches were.) Armetta, if you haven't checked out your prednisone, you might want to check it. Tablets, as opposed to gelcaps or liquids, seem more likely to have it.

On that subject, have any of you corn allergic people found a tylenol/acetaminophen preparation that doesn't have corn starch? I have not suceeded at that yet.

mouse Enthusiast

To be honest, I have not tackled my meds for the corn. I have only, at this time, done all the foods, etc. I use a nebulizer about 3 times a day and that keeps my wheezing to a very minimum. I know in the future I will have to check the meds, but I just don't want to tackle that right now. But, when I do, I will just call Caremark and they will check them all for me. They already flag my RX list for gluten and NEVER give a generic unless it is gluten-free.

kabowman Explorer

Ditto with my meds and corn - those I try to keep to minimum but haven't noticed too many problems with it as long as that is the extent of my corn. I am not to a point where I have to eliminate those yet.

I have cut out my salt and only use the one sea salt I found that doesn't use anything as an anti-caking agent - but - I still use products with xanthum gum, for now.

I know some citric acid is made from corn and I have problems with some citric acid but not others - kind of like a crap shoot and sometimes I get sick but mostly I don't and once I figure out it is the one product with citric acid, I assume it is made from corn and avoid it from then on.

Other that the meds, no corn and you are right, it is in everything. It is worse than soy and gluten.

CeliacInSanDiego Apprentice
Ditto with my meds and corn - those I try to keep to minimum but haven't noticed too many problems with it as long as that is the extent of my corn. I am not to a point where I have to eliminate those yet.

I have cut out my salt and only use the one sea salt I found that doesn't use anything as an anti-caking agent - but - I still use products with xanthum gum, for now.

I know some citric acid is made from corn and I have problems with some citric acid but not others - kind of like a crap shoot and sometimes I get sick but mostly I don't and once I figure out it is the one product with citric acid, I assume it is made from corn and avoid it from then on.

Other that the meds, no corn and you are right, it is in everything. It is worse than soy and gluten.

I am SO grateful for this forum! So much good information!

Salt! I never even thought to check my salt! So, I just checked and it seems ok, but more ingredients in it that I ever imagined (I pictured: salt, sodium iodide, the end). Was there a particular ingredient in your salt that you were concerned about?

Xanthum gum? Uh-oh! I thought gums were ok! What is the story with xanthum gum?

I had no clue about the citric acid being from cord at times. I have been wondering, though. I have issues with citrus, but so far, I think I'm ok with citric acid, which I can't make sense of. I'll have to watch that.

What about you and maltodextrin?

kabowman Explorer

OK, I read, on this forum, that xanthum gum, something in salt - I cannot find the thread right now but it was on corn (in most salts - I found one sea salt, that tastes INCREDIBLE that does not have it), and some citric acid is derived from corn--most citric acid is derived from a mold. I really expected that to be a problem but it isn't. Also, that the coating on styrofoam is corn - another fun one!

My ex was coming by the my house to pick up our boys and when he got there, I was emptying all our salt shakers and asked him if he wanted the rest - he goes, you're allergic to SALT????? Kind of funny when you look at it *that* way.

Guam gum is from a different plant but too much acts like a laxitive. I avoid maltodextrin "maltodextrins are easily digestible carbohydrates made from natural corn starch."

Now, like I said, I still have some corn starch, but keeping it to a minimum can't hurt - especially since I am getting more and more sensitvie.

CeliacInSanDiego Apprentice

OK, I read, on this forum, that xanthum gum, something in salt - I cannot find the thread right now but it was on corn (in most salts - I found one sea salt, that tastes INCREDIBLE that does not have it), and some citric acid is derived from corn--most citric acid is derived from a mold. I really expected that to be a problem but it isn't. Also, that the coating on styrofoam is corn - another fun one!

My ex was coming by the my house to pick up our boys and when he got there, I was emptying all our salt shakers and asked him if he wanted the rest - he goes, you're allergic to SALT????? Kind of funny when you look at it *that* way.

Guam gum is from a different plant but too much acts like a laxitive. I avoid maltodextrin "maltodextrins are easily digestible carbohydrates made from natural corn starch."

Now, like I said, I still have some corn starch, but keeping it to a minimum can't hurt - especially since I am getting more and more sensitvie.

[/quote}

I was intrigued and concerned about what you are saying you saw regarding xanthan gum:

This site says that it is from corn

Open Original Shared Link

A couple web sites say that it is produced by a bacteria that lives on broccoli, etc:

Open Original Shared Link

Open Original Shared Link

A letter from the FDA says that it is from the bacteria: "Ingredients Solutions describes xanthan gum (ethanol precipitate) as an anionic, soluble exopolysaccharide produced by fermentation of the nontoxigenic and nonpathogenic bacterium Xanthomonas campestris. "

Open Original Shared Link

So, I am going with the FDA and will not worry about xan than gum.

I also checked out the styrofoam thing. I learned that not only can corn be in some styrofoam, but also in plastic utensils! Yikes!

Open Original Shared Link

I like your "allergic to salt" story. I recently returned some shredded cheese to the supermarket because 1) i'm not sure if I can do dairy and 2) I know I couldn't do that cheese because they used cornstarch on it to prevent clumping. The clerk says to me in disbelief, "You're allergic to cheese!?" Anyway, he was young...

Do you think that you are getting more sensitive because that is how this disease evolves? or because there are still irritatants in your diet? or because there is still gluten (theoretically, for all of us Celiacs, this is the primary irritant) inyour diet?

kabowman Explorer

OK, thank GOD - I have some rice tortillas in my fridge with xanthum gum that I have been a little afraid to eat. USUALLY, I am the one to research stuff before passing it along but have been so busy at work I haven't had time and I don't usually computer at home since I am on so much at work. Anyway, glad you fixed that so nobody else will have that misconception!!!

I truly think I am becoming more sensitve as it goes along. Of course, I am the only one in a house of 5. I have been using a rag which I wash really, really well to clean the counters, I am going to switch to either paper towels or 2 sponges - one for first and one for second and let everyone look at me and just wonder.

The reason I suspect this is, I used to share non-stainless steel pots and be OK, sort of - now I get deathly ill. Now I have my own pots. We already had dedicated skillets and utensils. I imagine when our kids (12--a month from 13, 13, and 15 1/2) leave - our house will convert to all gluten-free, SF - never dairy free - my hubby truly lives for his cheese. It goes on EVERYTHING, literally.

At least my dad, who is coming for a visit is finally getting a clue. He always wants to eat out, he thinks I am paranoid with my constant wiping, etc. but after I told him how sick I have been and all the meds I have been taking to survive, he offered to just stay home and eat. Wow!!!

Camping is here and I am going to have my own ice chest - see paranoid - so that the kids won't be digging through with their gluten, soy, corn, etc. covered hands contaminating my ice!! of all things. I even bought new pots just for camping after being sick for a week at Smokey Mountain NP last year, once I figured out what the problem was.

skbird Contributor

About citric acid - it is derrived from mold and a sugar, often corn sugar/syrup. I am allergic to the mold so cannot have any citric acid. Baloons have corn starch in them, a drag. Also, they are making these new recyclable bags out of corn - nice. I want to recycle and use products that break down, but I won't use corn.

For a long while I thought it was insane to have so many sensitivities in one person. Now I think it's odd for someone to *only* have one food sensitivity/allergy/reaction. In my case, I think I'm just too sensitive to everything. I was told all my life, "you have such fair skin/hair - you must be sensitive to everything!" But I didn't think I was. Now I know I am, and people can't understand. Confusing messages in this world.

Stephanie

autoimmune reaction: gluten

sensitive to: nightshades, alcohol

allergic to: aspergillus mold, corn, shellfish

reactive hypoglycemic (not diabetic)

*Citric acid aside: if interested, the mold, aspergillus is also in: salad preservatives (commercial salads, etc) tofu, tempe, soy sauce/tamari/fermented soy products, black tea, some cholesterol meds, and is a common mold on fruit, coffee, and chocolate. For me it causes stomach pain and gas starting within 15 mins, migraines, hives, itching.

inquirer Newbie

Look into supplementing with glutamine. Glutamine will help the villi recover which will decrease intestinal permeability thereby hopefully to reduce your senstivities in the future. If I knew how, I would provide the link for you but you can run a search under glutamine and intestinal permeability and should be able to bring up some interesting information.

slpinsd Contributor

Hi Rachel and welcome to the board. It is great to see a fellow San Diegan!

When I was diagnosed with gluten intolerance, I also had an IgG food sensitivity test done, which included 96 foods. That helped me to zone down in on exactly what I was intolerant to. I also keep a food diary. It might help if you do want to check into the blood testing. I came up with bananas, pinapples, sugar, sesame, eggs, many other fruits, coffee. I've been gluten-free for almost 6 months now and I am definitely less sensitive to things. And yes- my Dr. also recommended Glutamine. I haven't taken it yet but I got it at whole foods.

CeliacInSanDiego Apprentice
OK, thank GOD - I have some rice tortillas in my fridge with xanthum gum that I have been a little afraid to eat. USUALLY, I am the one to research stuff before passing it along but have been so busy at work I haven't had time and I don't usually computer at home since I am on so much at work. Anyway, glad you fixed that so nobody else will have that misconception!!!

I truly think I am becoming more sensitve as it goes along. Of course, I am the only one in a house of 5. I have been using a rag which I wash really, really well to clean the counters, I am going to switch to either paper towels or 2 sponges - one for first and one for second and let everyone look at me and just wonder.

The reason I suspect this is, I used to share non-stainless steel pots and be OK, sort of - now I get deathly ill. Now I have my own pots. We already had dedicated skillets and utensils. I imagine when our kids (12--a month from 13, 13, and 15 1/2) leave - our house will convert to all gluten-free, SF - never dairy free - my hubby truly lives for his cheese. It goes on EVERYTHING, literally.

At least my dad, who is coming for a visit is finally getting a clue. He always wants to eat out, he thinks I am paranoid with my constant wiping, etc. but after I told him how sick I have been and all the meds I have been taking to survive, he offered to just stay home and eat. Wow!!!

Camping is here and I am going to have my own ice chest - see paranoid - so that the kids won't be digging through with their gluten, soy, corn, etc. covered hands contaminating my ice!! of all things. I even bought new pots just for camping after being sick for a week at Smokey Mountain NP last year, once I figured out what the problem was.

Maybe your Dad would like to read this forum!

You are saying that using the same, already washed, glutened pan is a problem for you? I have been wondering how far the trace contamination matters. Some foods say that they are processed on the same equipment. Is that a problem for you?

I am constantly feeding my 13 month old rice and corn foods (no gluten for him) and wondering about cross contamination. I try to wash my hands if I really get messy with his food while we are eating together. I also make sure to use a utensil to feed myself when I have his food on my hands. I do a lot of handwashing during our meals together. When hubby is home, he does more fo the feeding. Otherwise, I don't see a great way around this. Since I have a problem with all grains, I don't feel comfortable eliminating all grains from his diet because of my cross contamination issues. Comments?

Rachel

AndreaB Contributor

I would think being on a gluten free diet would be sufficient for your son unless he shows signs of intolerance to other grains. My family just went gluten free (except for some granola my hubby is finishing). He's the only one that doesn't have an active gluten sensitivity but he has two genes that predispose to celiac. I showed alot of allergies when I had the testing done but am hoping that I'll be able to go back to bananas anyway. Milk didn't show as a problem with enterolab but showed on my allergy testing so I'm thinking I'll be able to add that back at some point. I don't know if I have celiac (only mild symptoms if any) or just the gluten sensitivity. I won't be going back to gluten since my IgA is responding in my intestines.

CeliacInSanDiego Apprentice
About citric acid - it is derrived from mold and a sugar, often corn sugar/syrup. I am allergic to the mold so cannot have any citric acid. Baloons have corn starch in them, a drag. Also, they are making these new recyclable bags out of corn - nice. I want to recycle and use products that break down, but I won't use corn.

For a long while I thought it was insane to have so many sensitivities in one person. Now I think it's odd for someone to *only* have one food sensitivity/allergy/reaction. In my case, I think I'm just too sensitive to everything. I was told all my life, "you have such fair skin/hair - you must be sensitive to everything!" But I didn't think I was. Now I know I am, and people can't understand. Confusing messages in this world.

Never thought of the balloons. Thanks. Ialso want to recycle and reuse, but agree with not wanting to use corn. An odd thought: I wonder how the use of corn-derived ethanol in car fuels effects us corn sensitive people...

Look into supplementing with glutamine. Glutamine will help the villi recover which will decrease intestinal permeability thereby hopefully to reduce your senstivities in the future. If I knew how, I would provide the link for you but you can run a search under glutamine and intestinal permeability and should be able to bring up some interesting information.

A good tip. Since you suggested it, I found many links on glutamine use in TPN (IV nutrition) and reducing intestinal permeability. Also found this link at whole foods:

Open Original Shared Link

I will think about supplementing with glutamine.

What other supplements/alternative approaches have people tried/heard of for reducing intestinal permeability, overall inflammation, etc?

I am pursuing a number for myself, including:

probiotics (made a HUGE difference for me recently)

B12

Other B vitamins

High dose omega 3's

evening primrose oil

Hi Rachel and welcome to the board. It is great to see a fellow San Diegan!

When I was diagnosed with gluten intolerance, I also had an IgG food sensitivity test done, which included 96 foods. That helped me to zone down in on exactly what I was intolerant to. I also keep a food diary. It might help if you do want to check into the blood testing. I came up with bananas, pinapples, sugar, sesame, eggs, many other fruits, coffee. I've been gluten-free for almost 6 months now and I am definitely less sensitive to things. And yes- my Dr. also recommended Glutamine. I haven't taken it yet but I got it at whole foods.

Ah! A fellow San Diegan! We need to talk doctors! Perhaps we should take that off-line. I'll message you.

What dose of Glutamine did your doctor recommend? How often?

inquirer Newbie

You can try Quercetin for all over inflammation. I'm also in San Diego and recently took my husband (he's the one that's really, really sick) to see an integrative medicine specialist (MD). They straddle the fence between holistic and traditional. I wanted to make sure I was on the right road and didn't want the supplements I was giving my husband to cause more harm than help. She's located in Poway.

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    • xxnonamexx
      I have read fermented foods like sauerkraut, pickles, Kefir, Kombucha are great for gut health besides probiotics. However I have searched and read about ones that were tested (Kefir, Kombucha) and there is no clear one that is very helpful. Has anyone take Kefir, Kombucha and noticed a difference in gut health? I read one is lactose free but when tested was high in lactose so I would probably try a non dairy one. Thanks
    • SamAlvi
      Thanks again for the detailed explanation. Just to clarify, I actually did have my initial tests done while I was still consuming gluten. I stopped eating gluten only after those tests were completed, and it has now been about 70 days since I went gluten-free. I understand the limitations around diagnosing NCGS and the importance of antibody testing and biopsy for celiac disease. Unfortunately, where I live, access to comprehensive testing (including total IgA and endoscopy with biopsy) is limited, which makes things more complicated. Your explanation about small-bowel damage, nutrient absorption, and iron-deficiency anemia still aligns closely with my history, and it’s been very helpful in understanding what may be going on. I don't wanna get Endoscopy and I can't start eating Gluten again because it's hurt really with severe diarrhea.  I appreciate you taking the time to share such detailed and informative guidance. Thank you so much for this detailed and thoughtful response. I really appreciate you pointing out the relationship between anemia and antibody patterns, and how the high DGP IgG still supports celiac disease in my case. A gluten challenge isn’t something I feel safe attempting due to how severe my reactions were, so your suggestion about genetic testing makes a lot of sense. I’ll look into whether HLA testing is available where I live and discuss it with my doctor. I also appreciate you mentioning gastrointestinal beriberi and thiamine deficiency. This isn’t something any of my doctors have discussed with me, and given my symptoms and nutritional history, it’s definitely worth raising with them. I’ll also ask about correcting deficiencies more comprehensively, including B vitamins alongside iron. Thanks again for sharing your knowledge and taking the time to help. I’ll update the forum as I make progress.
    • knitty kitty
      Blood tests for thiamine are unreliable.  The nutrients from your food get absorbed into the bloodstream and travel around the body.  So, a steak dinner can falsely raise thiamine blood levels in the following days.  Besides, thiamine is utilized inside cells where stores of thiamine are impossible to measure. A better test to ask for is the Erythrocyte Transketolace Activity test.  But even that test has been questioned as to accuracy.  It is expensive and takes time to do.   Because of the discrepancies with thiamine tests and urgency with correcting thiamine deficiency, the World Health Organization recommends giving thiamine for several weeks and looking for health improvement.  Thiamine is water soluble, safe and nontoxic even in high doses.   Many doctors are not given sufficient education in nutrition and deficiency symptoms, and may not be familiar with how often they occur in Celiac disease.  B12 and Vitamin D can be stored for as long as a year in the liver, so not having deficiencies in these two vitamins is not a good indicator of the status of the other seven water soluble B vitamins.  It is possible to have deficiency symptoms BEFORE there's changes in the blood levels.   Ask your doctor about Benfotiamine, a form of thiamine that is better absorbed than Thiamine Mononitrate.  Thiamine Mononitrate is used in many vitamins because it is shelf-stable, a form of thiamine that won't break down sitting around on a store shelf.  This form is difficult for the body to turn into a usable form.  Only thirty percent is absorbed in the intestine, and less is actually used.   Thiamine interacts with all of the other B vitamins, so they should all be supplemented together.  Magnesium is needed to make life sustaining enzymes with thiamine, so a magnesium supplement should be added if magnesium levels are low.   Thiamine is water soluble, safe and nontoxic even in high doses.  There's no harm in trying.
    • lizzie42
      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine? 
    • knitty kitty
      Yes, I do think they need a Thiamine supplement at least. Especially since they eat red meat only occasionally. Most fruits and vegetables are not good sources of Thiamine.  Legumes (beans) do contain thiamine.  Fruits and veggies do have some of the other B vitamins, but thiamine B 1 and  Cobalamine B12 are mostly found in meats.  Meat, especially organ meats like liver, are the best sources of Thiamine, B12, and the six other B vitamins and important minerals like iron.   Thiamine has antibacterial and antiviral properties.  Thiamine is important to our immune systems.  We need more thiamine when we're physically ill or injured, when we're under stress emotionally, and when we exercise, especially outside in hot weather.  We need thiamine and other B vitamins like Niacin B 3 to keep our gastrointestinal tract healthy.  We can't store thiamine for very long.  We can get low in thiamine within three days.  Symptoms can appear suddenly when a high carbohydrate diet is consumed.  (Rice and beans are high in carbohydrates.)  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function, so symptoms can wax and wane depending on what one eats.  The earliest symptoms like fatigue and anxiety are easily contributed to other things or life events and dismissed.   Correcting nutritional deficiencies needs to be done quickly, especially in children, so their growth isn't stunted.  Nutritional deficiencies can affect intelligence.  Vitamin D deficiency can cause short stature and poor bone formation.   Is your son taking anything for the anemia?  Is the anemia caused by B12 or iron deficiency?  
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