What are your gluten reactions like?

[Gloria]

Linda,

I'm sorry you're having D more often. I've always said that I can deal with the known; it's the unknown that drives me crazy. It's very frustrating when you don't know what's causing the D.

Some have said that we need to be careful ordering eggs in restaurants because sometimes they cook them in butter or a soy-based oil.

Celiacs are very good at avoiding gluten, but many of them don't need to be concerned about any other foods. It's possible that the restaurant had the gluten issue covered, but not the other common allergens.

Gloria

[Linda in BC]

Thanks for your response, Gloria. You know, after I wrote that post a little light bulb started blinking in my head....I have been, one by one, dropping different flours from my homemade gf baking ( tapioca, sorghum, teff, potato, etc) trying to figure out what in my baking has consistently made me react. Call me thick, or an ostrich, but I have never even considered it might be the eggs!!! I did not get the Enterolab test for eggs done. I think I just could not bear to think of losing eggs from my diet too. At this point I don't care if I have to give them up..I would just like to know, as you said, what is causing it and have just one D. Free day!!!! I think I am going to have to look into this, experiment with egg free baking and /or get the test done. Thanks , Gloria, your post "solidified" my light bulb.
Linda

[hoosier1]

My reaction to gluten seems to occur about 24 hours later. When I have my next bowel movement... yikes. I do get the stomach rumbling sooner than that but it is the havoc the gluten seem to cause in my lower GI that is the most disconcerting. But boy am I learning to stay away from it.

[Zizzle]

Linda,
I seem to be in a similar situation. After going GF/YF, I had such incredible improvement, I was on cloud 9 and pumped about the diet. Now, 3 months in, I'm finding that although my frequency is normal (1-2/day, occasionally none), it's still loose or watery every time. But there is no discomfort, no pain, no gas, etc. unless I'm glutened. And I'm not eating the most GI-friendly diet. I eat lots of salads, fruit, nuts, fats, dark chocolate, even occasional alcohol, and none of it makes me run to the bathroom like it used to. I wonder if this is a normal stage of healing, or whether I should be looking for other intolerances (or trying to be more strict about casein and soy avoidance). I have noticed that some processed GF cookies and milk alternatives don't agree with me 100%, so I'm starting to suspect additives like carageenan, xanthan, gum, etc. My Enterolab results were weak positive for dairy and soy, and I don't notice any immediate reactions to them (in small amounts). But I suppose they could be the source of the persistent loose motions too.

Had 2 hard boiled eggs for breakfast with Old Bay seasoning and I'm feeling great. I tested negative for eggs through Enterolab, thank God. Can't imagine taking away my eggs!

[Linda in BC]

Hi Zizzle:

Some one more experienced than me may have some insight into your question. But I do know that for every item you listed ( xanthum gum, Carrageenan) and every one I listed and more, there is some one on here that cannot tolerate it.

I chose Low Dose Naltrexone as my med to treat this, and going GF, DF (which I had already been for 7 years), corn free and soy free (although I did not test positive for soy, just thought I don't think the stuff is good for us in the long run.) At first I had the same experience as you... frequency/urgency way down, (2-3 per day) but always still D. What I found was that slowly over time the frequency has crept up, and I have only had one visit from Norman and one sort of visit, in the whole 3 months. If I had remained as I was at first, I could have lived quite happily like that, because it was such a vast improvement over the 12-15 potty trips per day I was having before. But unfortunately I have been forced to keep looking for intolerances. For you, if it doesn't get worse. you may just be fine doing what you're doing . I hope for your sake that you don't have a similar experience to me. I have read that once your major intolerance foods are removed, other less serious ones start to show up.

Linda

[Zizzle]

Just thinking out loud here... if this is truly a disease of: genetic susceptibility + leaky gut + bacterial/viral/stress trigger + unfriendly mix of gut bacteria, it seems to me our food sensitivities are not always going to stay the same. The more we eat of any given food (even the "safe" ones), the more opportunity it has to be presented to our bloodstream through our leaky gut, and voila! another food sensitivity develops. So perhaps the sensitivities weren't there all the time being masked by the big gluten reaction. Perhaps they developed after gluten was removed??

Perhaps many of the members here on a seemingly endless quest to indentify their food sensitivities are just entering an endless loop of sensitization, identifying the sensitivity, altering the diet, and developing a new sensitivity?

In the world of allergy, there is an alarming increase in adult women developing severe food allergies (nuts, shellfish, eggs, even cinnamon) out of the blue. Frankly, there is an alarming rate of lots of horrible health conditions happening to women - breast and lung cancer, allergies, IBD, Lupus, RA, etc. I suspect something environmental is to blame, not just the mix of our own bacteria and genes. Endocrine inhibitors? All the nasty chemicals that bond to our estrogen receptors?

It seems everyone is out to quantify, understand and treat all these things, but researchers aren't looking for the root cause.

I wonder if anyone on this board has had repeat food sensitivity testing through enterolab and seen new sensitivities develop, or antibody levels significantly increase? Anyone develop food allergies while trying to treat their MC?

[Linda in BC]

I wonder if anyone on this board has had repeat food sensitivity testing through enterolab and seen new sensitivities develop, or antibody levels significantly increase?

that is an excellent question.
Linda

[tex]

My Enterolab results were weak positive for dairy and soy, and I don't notice any immediate reactions to them (in small amounts). But I suppose they could be the source of the persistent loose motions too.

A positive result is a positive result. "Weak" is moot term, with allergies and food sensitivities. A weak positive result is like saying that you are slightly pregnant. Either you are, or you aren't.

So perhaps the sensitivities weren't there all the time being masked by the big gluten reaction. Perhaps they developed after gluten was removed??

The genes are all triggered when the MC is triggered - there doesn't appear to be any scientific basis for an "evolutionary process" mechanism, in this case. The immune system has finite resources, and is thereby forced to concentrate on the most salient sensitivity of the moment, at any given time. Once the antibodies to that threat decline sufficiently, so that they are below a "threat" threshold, then the immune system will concentrate on the next most prominent sensitivity in the hierarchy, and so on down the line.

Foods such as lettuce, fruits, etc., and other sources of fiber, are not true food sensitivities, but merely irritations to the gut, in it's hypersensitized state, (due to the inflammation). It is the rough texture of high fiber foods that causes the problem, (not an autoimmune reaction). Irritating foods can be safely added back into the diet after the gut heals. True sensitivies will always cause problems.

I believe that I've mentioned all this to you before, but you don't seem to believe me, and you appear to still be in the first stage of recovery - denial. I can certainly understand why you feel that way, but the fastest way to achieve total remission, is to eliminate all your sensitivities, (100%), and minimize the fiber in your diet. Then, after your gut is able to heal a bit, you can take more liberties with your diet without a significant risk of serious repercussions.

Tex

[Gloria]

Perhaps many of the members here on a seemingly endless quest to indentify their food sensitivities are just entering an endless loop of sensitization, identifying the sensitivity, altering the diet, and developing a new sensitivity?

That would be me in a nutshell. Every time I eliminate one food, I improve for a while, only to resume having problems and another food needs to be eliminated. I'm just about at the bottom of the barrel, with few foods in my arsenal left to eliminate.

Anyone develop food allergies while trying to treat their MC?

All the time. I've been at this for three years and just since this summer I've eliminated more foods.

I should stress that my case is very unusual and is probably one of the most difficult to resolve.

I will give an example of what happens to me. I have had problems with mouth sores. I'm not sure if they predate MC or not. I thought everyone had them until I read someone's post. Then I realized that they were unusual.

I first eliminated toothpaste. The sores went away for a time. Then they returned.
Next I elimated acidic juices: lemon and lime. I had already eliminated all fruits. The sores disappeared for a week, then returned.
Realized my homemade mayonnaise was giving me mouth sores.
I eliminated the apple cider vinegar ingredient and replaced it with rice vinegar. Same pattern. Disappeared, then returned.
Replaced rice vinegar with ascorbic acid. Same pattern.
Gave up all acids.
Started using olive oil in a new recipe which also uses tahini and dry mustard. Had no problems for a short time, then the mouth sores returned.
Replaced olive oil with walnut oil. No problems for a time, now I have mouth sores again. There's no doubt in my mind that if I eliminated the tahini and dry mustard, I would follow the same pattern.

All I want is to be able to put something on my tortillas and bread so that it's not so blanking dry. I've tried avocado, which has the lowest fructose of all fruits and vegetables, and even it gives me mouth sores.

So in answer to your question, three years after going GF, DF, EF, and SF, I'm still finding new intolerances. I'm starting to think that there is something else going on with my system besides MC. I can't tell if there is a relationship between the mouth sores and MC because I have never been able to get rid of them for more than 10 days.

I've begun to think that I need to keep eating one low-reactive food, like avocado, so that my immune system has something to combat. Maybe I could stop eliminating more foods that way. I've only got a few foods/ingredients left.

I'm sorry my response is so long. I guess I'm just venting because this gets so frustrating.

Gloria