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Raging, Inflammed Intestines
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HELP!!! I've followed a gluten-free diet since last Oct.09. Went gluten-free, casein free, egg, soy, yeast free in Dec. 09. Started doing betten at that point. About six weeks ago, I visited my son at college and dined out and must have inadvertantly ingested one of those food proteins. I have NOT recovered from that. I don't know if I keep adding insult to injury or what. I also know that I cannot eat: corn, fresh fruit, fresh veggies or salad--they send me to the bathroom to never emerge AGAIN!! Last night I made turkey stirfry over rice. I guess the veggies weren't cooked long enough since my stomach has been gurgling/rumbling ever since...and I have made many trips to the bathroom--not a pleasant experience. I am at my wits end as to how to get my insides healed to the point that I experience a normal BM. Since I started my gluten-free diet, I have only had a six-day stretch of near normal BM's. Sorry to be so graphic. I have had stool and gene testing; both positive for gluten sensitivity (two glu. sens. genes) with the sensitivites listed above. The Celiac research center at UMBC told me to go get the blood work, the biopsy, and a colonoscopy before they would even give me an appt. I have no insurance to do that. I'm an RN but should I see a nutritionist? I have no problem sticking to a diet that eliminates all the offending food...I am a consistent label reader and I cook all my food. But, nothing seems to help since my insides seem to be revolting no matter what I consume. Should I be fasting for several days to give my gut a rest? Should I be eating nothing but chicken broth for a week? I know if I can get out of this inflammed state...I may be able to get back on the right track. Any suggestions?

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Maybe it is time for a drastic step. I have heard of people who eliminate everything except boiled or grilled chicken and rice until your intestines stabilize then add back one thing at a time.

HELP!!! I've followed a gluten-free diet since last Oct.09. Went gluten-free, casein free, egg, soy, yeast free in Dec. 09. Started doing betten at that point. About six weeks ago, I visited my son at college and dined out and must have inadvertantly ingested one of those food proteins. I have NOT recovered from that. I don't know if I keep adding insult to injury or what. I also know that I cannot eat: corn, fresh fruit, fresh veggies or salad--they send me to the bathroom to never emerge AGAIN!! Last night I made turkey stirfry over rice. I guess the veggies weren't cooked long enough since my stomach has been gurgling/rumbling ever since...and I have made many trips to the bathroom--not a pleasant experience. I am at my wits end as to how to get my insides healed to the point that I experience a normal BM. Since I started my gluten-free diet, I have only had a six-day stretch of near normal BM's. Sorry to be so graphic. I have had stool and gene testing; both positive for gluten sensitivity (two glu. sens. genes) with the sensitivites listed above. The Celiac research center at UMBC told me to go get the blood work, the biopsy, and a colonoscopy before they would even give me an appt. I have no insurance to do that. I'm an RN but should I see a nutritionist? I have no problem sticking to a diet that eliminates all the offending food...I am a consistent label reader and I cook all my food. But, nothing seems to help since my insides seem to be revolting no matter what I consume. Should I be fasting for several days to give my gut a rest? Should I be eating nothing but chicken broth for a week? I know if I can get out of this inflammed state...I may be able to get back on the right track. Any suggestions?

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I am so so sorry for your pain. I have been there. I was sick for six weeks once too and it was one of the worst times ever. It sounds like your gut is really inflamed like you say. Then it doesn't matter what you eat - even if it is stuff you can eat when your gut is not inflamed. I've fasted before and it "helps" but it's not really good for you. None of my doctors has EVER recommended fasting, so while sometimes it makes me feel better, it does weaken me, which probably inhibits healing. SO. I would recommend finding things that are really easy on your gut. No solid food, but it needs to have nutrients your body needs. I am a HUGE fan of gerber rice baby cereal. You can mix with water, rice milk, or whatever. I also get this meal replacement formula called alpha ENF. It's from canada, but it is gluten and casein free, (but I am not sure about the soy) and it's designed specifically for inflamed guts. Chicken broth is good too, but has little in the way of real nutrients. I recommend pedialyte to get your electrolytes in balance after all that diah. Also - all the fresh fruit & veggies are good for you when your gut is healthy, but when it's not, it's actually pretty tough to digest, especially if it's fresh. After just a day or two of "rest" with the other food sources, I sometimes try introducing steamed or boiled carrots - but cooked so that they are really, really soft. I take it one day at a time. When i start feeling better, I usually give myself just one more day before introducing more real foods. Keep us posted.

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I also get this meal replacement formula called alpha ENF. It's from canada, but it is gluten and casein free, (but I am not sure about the soy) and it's designed specifically for inflamed guts.

I looked this up online and found the site with ordering info. What is the taste/texture of this stuff like? I've been looking for something like this for a kid that works for my husband, but I'm concerned he won't eat/drink something that is "yucky."

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Are you sure about the casein, or is it just lactose? I ask this because I was tested as casein intolerant but could eat cheese, yogurt, anything cultured, just fine, so it was not an accurate assessment. I also ask it because I find nothing calms my inflamed intestines like yogurt. I use it as a preferable alternative to the neat scotch I used to use :lol: -- I think that that just shocked it into submission while the yogurt soothes it (but we are all different with our own solutions--just a suggestion).

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That was how I was in the beginning. I get the milder form of that now when I get glutened. I ate chicken, bananas, potatoes and maybe one or two more things for what seemed like two weeks. They were the only things that bothered me minimally. When they stopped, I started adding things little by little. To agree with another poster, find what doesn't bother you, or what bothers you the least and stick with that until things calm down. Which, hopefully won't take too long. :)

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I looked this up online and found the site with ordering info. What is the taste/texture of this stuff like? I've been looking for something like this for a kid that works for my husband, but I'm concerned he won't eat/drink something that is "yucky."

I get the plain, not the vanilla, and I usually blend it with OJ or soymilk and a banana. That sort of mellows out the flavor a bit. If you add more fruits like berries, peaches, it hides it even more. But that depends on how well your gut is holding up. Even though the extra fruit is blended, if your gut is really inflamed I would keep it to the juice/soymilk & banana. The flavor isn't as strong as say, our bean flours are, but it's not nothing. It reminds me a little of chicken broth, but a little sweeter. The texture is a pretty fine powder. You can get clumps if you aren't up on the stirring, but it goes into solution all right nonetheless.

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    • Thanks Stephanie & Gemini for the info. that the 4 of 5 doesn't apply to children. I wasn't aware of that until now. 
    • I think the posters above have given you very good information and I will throw in my 2 cents worth.  I am surprised that they did not test her DGP IgA also.  I am sure that would have been positive.  They switched off with antibody classes and usually they do both tests for both antibodies.  IgA is more specific to Celiac but the IgG is also useful.  The testing shows your daughter is producing antibodies to the gluten in her diet. (DGP IGG). THe tTg shows positive for some damage or inflammation. You know........your daughter is only 4.  She hasn't been on the planet or eating gluten that long. It can take years for enough damage to occur for it to be able to be found on biopsy.  I would say it is highly likely that this is Celiac, especially with her symptoms. But because the damage hasn't graduated to bad enough yet, they won't diagnose her. I think you need to do what others have said and get all copies of testing and find someone else who will take a look and give a diagnosis, especially if they have you do a dietary trial and her symptoms go away.  That might be the only recourse if you want faster proof. I know I would want faster.  I would not really be happy if I thought I had to keep feeding her something that was making her sick.  If you keep her on gluten long enough, the diarrhea will probably show up. BTW.........the criteria mentioned regarding diagnosis does not apply to kids.  I know it's silly and stupid but most leading Celiac specialists do not go by this criteria for kids.......adults only.  Keep that in mind because it might come up.  You could recognize it but they might not. Have you considered gene testing, to help bolster a diagnosis? As far as false positives go, it's the other way around. False negatives happen more frequently than many people think.  It's a recurring theme here.  With her symptoms, which is what I had, a bloated belly and tummy aches are telling.  Have they tested her for lactose intolerance?  That can cause similar symptoms, although it sure won't raise those 2 blood tests.  Keep looking for Celiac because there are many red flags here.
    • This 4 out of 5 criteria does not apply to children. I was never given a reason why, but it isn't.     That said, you may try to get a second opinion from another GI who may be willing to give her a firm dx.  We were in your boat 6 years ago and while I'm sure I'll get slammed for it, I wish we had kept gluten in our kiddos diet till he scoped positive for a variety of reasons.  Again, even family is different and you have to find what is best for you!
    • Mnoosh, I had swollen lymph nodes prior to celiac dx and for a while after going gluten free. My neck as well as groin. The groin ones were the worst. Guess what? All gone! It's hard to recall a time line & consider that everyone is different but I think mine completely resolved within a year.  You've been given great information. Just breathe and then again, breathe. You're going to be fine. 
    • It is the only thing you have eaten, so it can't be anything else?  I eat it with no issues so I am not sure how you can be certain that is the problem.  All I am saying is that its sort of "your word against mine and the company's word".  
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