New intolerances popping up

Post by **Rosie** » Wed Oct 28, 2009 4:36 pm

When I went gluten, dairy, soy and yeast free, according to the Enterolab results I thought that would be that, especially since I didn't seem to be as sick or have been sick as long as many others on this site. Initially I felt great......I had mostly Normans, fatigue lifted, my asthma and raspy voice dramatically improved, and aches and pains disappeared.

Then after about a month, I started noticing the rot setting in. I especially noticed the onset of fatigue, and my back and leg muscles felt sore. I started having more BM's a day, 3 or 4, although they were mostly Normans with a few looser ones slipped in. I certainly didn't feel like I was in a flare, just that I was slipping backwards. Needless to say, this was disappointing, but certainly didn't suprise me, based on all the stories I've read here about multiple intolerances being uncovered once the main ones were eliminated.

So after first trying to see if I was accidently getting one of my main intolerances from some hidden source, I started looking at my diet for likely culprits. I had been eating a big bowl of oatmeal every morning, and had been for years. But I decided to eliminate that and see what happened. Low and behold, my aches and pains and fatigue went away, and I "firmed up" again. I thought I had solved the problem, but then noticed a slipping back, but not as noticable as before. I got a clue when I thought about my experiments in baking with the Namaste gluten free flour mix. Whenever I baked something with it I had problems, but when I used the Namaste Pancake and Waffle Mix, I was fine. The only difference in the recipe was that sorghum flour was in the flour mix but not the pancake/waffle mix. So then I became suspicious about corn (very depressing). So now I'm experimenting with going corn free too, and so far I'm doing better again. I sure hope that I'm reaching the end of this....... But I need to wait a few weeks and see if that's the last.

A few other miscellaneous foods that I don't seem to handle are carageenan and squash. My hope is that as my gut heals, I'll be able to add a few things back again.

Rosie

JLH · Post by **JLH** » Wed Oct 28, 2009 7:26 pm

I hope you get your hope, Rosie.

I'm afraid of getting new intolerances like corn or eggs or peanut butter.

mbeezie · Post by **mbeezie** » Wed Oct 28, 2009 7:27 pm

Rosie,

Sounds like you may have a lectin problem. You may benefit from the Paleo diet, or at least test it out, get regular, and then add back grains one at a time. Dr. Fine is now offering other tests, so you may want to check that out as well.

Mary Beth

Gloria · Post by **Gloria** » Wed Oct 28, 2009 7:57 pm

Hi Rosie,

I can sure identify with you. Each time I think I've uncovered my last intolerance, a new one shows up. It's getting better, however, and my reactions are less intensive, for the most part. I've given up many foods as a precaution and really don't know if they are problematic. I still hope that I'll be able to add some of them back someday.

Sorghum flour and oatmeal are a couple of those foods; corn is another that I'm pretty sure is OK, but I avoid it as much as I can. I don't think you should worry about continuing to discover new intolerances. Each elimination is getting you closer to remission and allowing your colon to heal. We have the experience of others here to assure us that we will someday heal, as long as we stay with the program.

Gloria

Post by **tex** » Wed Oct 28, 2009 9:33 pm

Rosie,

You're getting to be a very good detective. Back when I was still sensitive to corn, I had the same problem with certain commercial mixes. I also concluded that it was the sorghum flour in those mixes, that caused the problem. Sorghum plants and maize plants, (we call it corn in this country, but the rest of the world refers to it as maize), don't have many obvious physical similarities, they are both members of the grass family, (so is wheat, barley, rye, oats, and rice). While the grain produced by maize and sorghum are also very dissimilar in appearance, from a nutritional viewpoint, they are very, very similar, and to a cereal chemist, they exhibit a lot of chemical similarities. In fact, in feedlot rations for livestock, the two are virtually interchangeable, except that sorghum has slightly more protein than maize, (only one or two percent). Therefore, it's not surprising that those of us who are sensitive to maize, (corn), are probably also sensitive to sorghum.

Thanks for the update. That's some great insight. I agree, after your GI tract heals sufficiently, you'll probably be able to reintroduce a lot of foods.

Tex

Dee · Post by **Dee** » Thu Oct 29, 2009 9:15 am

I definitely have no knowledge backing up why people with NCGS, continue on to have other food intolerances, and the biggest percentage of people that are diagnosed with celiac disease don't.
Hell, I just wish that I have celiac, and not everything else that seems to continue on with microscopic colitis.....
Can we do a poll on how many people are being strict on their gluten & other food intolerances and are in remission??? We have alot of members now, and I'd like to know the statistics.
Can you tell that I'm having a really, really bad day?????

Dee~~~~

MaggieRedwings · Post by **MaggieRedwings** » Thu Oct 29, 2009 9:21 am

Hi Dee,

I am right there with you on the kind of day. As long and as faithful as I have been dealing with being GF and all of my intolerances, it seems that I rarely go a day without D. Sometimes life just sucks and I am with you on the idea of Celiac instead of MC.

Hope your day gets better.

Love, Maggie

Post by **Rosie** » Thu Oct 29, 2009 11:11 am

I hope you get your hope, Rosie.

Thanks for your good wishes, Joan.

Sounds like you may have a lectin problem.

You may be right, Mary Beth. I've been avoiding beans/legumes just because I'm not crazy about them and they didn't seem to agree with me even before my MC became a problem. I'll check into this further.

I've given up many foods as a precaution and really don't know if they are problematic. I still hope that I'll be able to add some of them back someday.

Thanks, Gloria. I've only been working on my diet since July, and realize that it takes a while to heal. I feel good that I've managed to get pretty good control at this point without any medications. I rarely even take Imodium, as I haven't really gone into a "flare", just not doing quite as well. And the Imodium doesn't seem to help with the sore muscles and fatigue, which bother me more than my gut. I've only had one day with watery diarrhea in the past 3 months, and that was after eating some carryout that I was assured was gluten, dairy and soy free......... Experiences like that make me even more nervous about eating out.

You're getting to be a very good detective.

Thanks, Tex. I'm a big mystery reader, so it's good to see it finally pay off, considering all the time and money I've spent on them over the years. I'm learing to pay a lot more attention to my body. For example, when the aches and pains started, I initially just attributed them to age. But then I noticed I was feeling more tired and realized that it felt like I did before, only not nearly as intense. It was then that I realized I was starting to react to something else. And from being on this Forum, I knew that there was a good possibility that more intolerances would be uncovered. Too bad I was right.......

Dee and Maggie, coping with multiple intolerances really sucks. I feel bad for you both that you are still struggling. And I suspect that I've got some work ahead of me before I really feel that I've tamed the beast of MC. :Itchscratch:

Rosie

ant · Post by **ant** » Thu Oct 29, 2009 11:37 am

Dear Dee, I completely agree.....

rant on. Celiacs (that are not also MC) get a clear cut Dx and a relatively straightforward treatment that the medical community and society endorses and caters for. Gluten free only....that is.... easy peasy..

Do not get me wrong, it is wonderful that classic Celiacs get diagnosed and have a successful treatment. BUT those with MC (including the high % of Celiacs that also have MC) have a much more complex set of intolerances to deal with. The criminal truth is that neither the mainstream medical community, nor (as a result) Society accepts or caters for the search for a comprehensive MC treatment. I do not blame society. But I DO blame (most) of the medical community for their utterly pathetic inability to lead on this.

Rant over, ANT

Post by **tex** » Thu Oct 29, 2009 11:49 am

Dee,

I'll set up a survey, but be aware that it will be strongly skewed, because over the years, most members who have achieved remission, no longer, (or very rarely), post, anymore. Of course, that also apples to a number of members who were not able to achieve remission, by any means. Not many people stick around, after they achieve remission.

Sorry that you're having a bad day.

Sorry that you're having a bad day, too, Maggie.

:bouqueofpinkroses:

for both of you.

Love,
Tex

Post by **Rosie** » Thu Oct 29, 2009 12:11 pm

Dr. Fine is now offering other tests, so you may want to check that out as well.

Mary Beth, I went to the Enterlab site and didn't see any additional sensitivity tests beyond the ones he has offered: gluten, dairy, egg, soy and yeast. What additional test will they be offering? Could you tell me more about this?

Rosie

Post by **tex** » Thu Oct 29, 2009 12:21 pm

According to a post that Mary Beth made a few weeks ago:

The new food tests are for nuts, legumes, meats, nightshades and other grains.

They're always slow to update their website, (maybe they don't have all the details worked out yet, such as pricing, etc. Anyway, whenever they add new tests, for a while at least, we usually have to e-mail them, or call them, to get the details on new tests, and to order them.

Tex

faithberry · Post by **faithberry** » Thu Oct 29, 2009 2:18 pm

Dee,

That is an excellent question. Why do those of us with NCGS have so many other intolerances?
I've read that people with double DQ 1 genes are more susceptible to food intolerances according to Dr. Fine's unpublished research, on Dr. Lewey's old fooddoc.journal, but I don't see the posting anymore. (Aren't you a double DQ1, Dee?)But what does that mean? Does it mean 3 o 4 or 50 foods? Or almost all food like me? I think I have fructose malabsorption, which does sometimes occur in celiac disease due to damage or inflammation that occurs in the SI. But it makes me wonder how much FM occurs in people with NCGS.

I'm depressed today. I feel I am getting nowhere trying to eat more foods except aggravating my mast cells and my body. UGH! Is it back to chicken and white rice again? Somehow I keep resisting Tex's spare food diet, thinking I will be able to eat other foods. I can manage 3 slices of cucumber, but not
4 :-)

I definitely don't have D since giving up gluten (mine was never severe). Just can't hardly eat
anything :-)

Ugh! Ugh! I just want to give up sometimes.

Gloria · Post by **Gloria** » Thu Oct 29, 2009 10:36 pm

Boy, I hear you all.

I bought some guava fruit the other day thinking that it was low enough in fructose that I could eat it. Wrong. I didn't realize that so much of the fruit was seeds, either. I only ate about 1/4" thickness of fruit, but I still reacted. It looks like it's lemons, limes, avocados, and tomatoes for me. I'm holding out hope that it's a temporary deprivation, like Tex's was.

Gloria

faithberry · Post by **faithberry** » Thu Oct 29, 2009 11:34 pm

I guess it all comes down to small bowel injury. Hedra, the list owner at the Yahoo Fructose Malabsorption Australia group posted this:

It is worth also testing for underlying conditions - celiac disease, non-celiac
gluten intolerance, food allergies, and SBBO or SIBO (small bowel bacterial
overgrowth) all can cause what is called 'secondary' Fructose Malabsorption.
Once those conditions are handled, and the bowel recovers from any injury
involved, more normal absorption of fructose can be gradually recovered.

So NCGI is one of the underlying conditions for FM, and probably for disaccharide enzyme deficiency and the other bowel factors that cause our multitidude of intolerances. Then throw in some wacky mast cells and extra histamine floating around and there can be symptoms anywhere in the body. I need to start calling mine 'multitude' rather than 'multiple' :)

Faith