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Confused...please Help
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Hi everyone,

I'm 5'8" tall, and I've lost down to 105 pounds (last time I checked)....I'm still losing a pound or two a week b/c of the diarrhea.

Celiac has definitely been ruled out as a dx, but I wonder about gluten intolerance.

Here's my question: Could foods without gluten give me "D" if I'm still eating foods with gluten? In other words, I ate a well-washed plain potato for breakfast and it gave me "D", but it doesn't have gluten and there is no damage to my villi. Could the fact that I still have gluten in my diet at other meals be what made the potato upset my stomach?

I just don't know anymore!!! Please help!

Thank you so much!

Julie

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Hi everyone,

I'm 5'8" tall, and I've lost down to 105 pounds (last time I checked)....I'm still losing a pound or two a week b/c of the diarrhea.

Celiac has definitely been ruled out as a dx, but I wonder about gluten intolerance.

Here's my question: Could foods without gluten give me "D" if I'm still eating foods with gluten? In other words, I ate a well-washed plain potato for breakfast and it gave me "D", but it doesn't have gluten and there is no damage to my villi. Could the fact that I still have gluten in my diet at other meals be what made the potato upset my stomach?

I just don't know anymore!!! Please help!

Thank you so much!

Julie

Hi Julie,

How was Celiac ruled out? Unless you have another disease diagnosis that is for sure causing the diarhea, you may still have Celiac with negative test results. The tests are very often false negative (meaning you have celaic disease but test negative). About 20-30% of celiacs test negative. However if you had even one positive test you have celiac without a doubt. There are not false positives. The good news is if you go gluten free and it does not work you can still be tested for other things. As to your question about eating some meals gluten-free and other meals with gluten, yes the gltuen can have a delayed reaction--for some people up to 3 days. When I get any accidental gluten I don't feel the effects of it untilt he next day and then the symptoms last for up to a week. In order to try the diet you cannot do it half way or cheat. You need to be 100% gluten-free to see if it helps and you need to try it for several months before deciding it doesn't help. One reason for trialing it so long is that it takes a while to learn everything that could contain gluten. For example if you put butter on that potato and the butter had crumbs you couldn't see from using it on toast or bread before you used it on the potato then the butter has been cross contaminated (cc) with gluten and can make you sick. Learning things like this takes time. The good news is you don't need a doctor's approval or diagnosis to go gluten free.

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Have you been checked for C-Dif ? Parasites? Do you take probiotics? A friend of mine has chronic D ,been through a million tests the end result is the body does not have enough friendly bacteria...

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My first thought is: Crohn's disease (http://en.wikipedia.org/wiki/Crohn%27s_disease). Have you been tested? It has many of the same symptoms of Celiac, which still could be the problem, but...I would think they should be testing you like crazy.

I am 5'8, and I know the lowest point on our weight scale is 125, so I know your underweight.

Personally, I would go to the doctor or hospital an not leave until they help fix you. :angry:

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You could have some sort of food allergy. I have an IgG allergy (some would say intolerance) to eggs. It's a delayed reaction so I didn't figure it out for a long time.

When daughter was diagnosed with an egg allergy, I quit eating them too. Then some time later I got some egg salad from a salad bar. I ate it and the next day I got D. Still not making the connection, I ate the rest of it and about 2 hours I got D. I suspected a problem with eggs.

Some time went by. Had some eggs that I had bought for husband but he didn't eat. I boiled them and made egg salad. Ate some. Next day got D. Then still didn't learn. Ate more the next day and got D. 2 hours later.

Suddenly it dawned on me! All those times I was eating eggs for breakfast instead of cottage cheese and the D. soon followed... It wasn't just nerves from knowing I had to drive in NY traffic. It was the eggs!

Finally went in for allergy testing. Dr. told me I was extremely allergic to something and could I guess what it was? Yep. Eggs!

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    • When it's that high, it almost always means Celiac.  Sure, you can have Crohns, too.  Just like you can have Celiac and diabetes, the common cold or a hang nail.  I wouldn't jump to Chrohns.  I don't think the tTg really has anything to do with Chrohns?  Where did you see that?  Sometimes, a slightly elevate tTg can be elevated from other issues, but >100 is not a " slightly elevated" reading
    • Hi! I'm new here, and I'm looking for some information because I'm having a hard time finding it.  Over Labor Day weekend I got some kind of intestinal bug. I didn't think much of it until the D persisted once a day up til now. I tried a priobiotic but that didn't help much. I have bad anxiety and began to think that I was just anxious and stressed. No fever, no pain, all bloodwork is normal, so no infection or anemia. My mother has 5 siblings and 3 have celiac. One other one had a high result on a blood test but was never officially diagnosed and insists she doesn't have it. So I went to my local health fair and got the ttg-iga test, just in case. My result came back at >100. So I have called and scheduled a visit with a GI for next week. Aside from the recent intestinal issues I have never thought that I had any signs of celiac. I do have dermatographism and have had that since I was 20 (I am 28). I have severe anxiety. I had PUPPPS when I was pregnant with my daughter and it was miserable. It looks much like the skin rashes that celiacs have. Again, didn't think much of it. Because of my anxiety I am terrified that this high blood test is from something else, like crohn's. I don't have diabetes, my liver and thyroid numbers are fine. I think it's much more plausible that this is celiac because of my family history. But my anxiety says "what if it's crohns?" Does anyone have any insight? Is it true that the ttg iga can be elevated from crohns and not celiac? Is >100 pretty definitive of celiac? I didn't know if crohns was the cause if the number would be this high.  I'm just freaked out. 
    • This does say it is for NCGS....so not  for Celiacs.  There is a drug being developed that may actually break down the gluten in the stomach before it hits the intestines.  However, that is still in clinical trials.
    • could be from your neck, or it is, literally, in your head. perhaps a scan is needed.
    • The anxiety thing is there I take teas, and supplements along with CBD oil to help with it, and long walks and exercise when I get antsy. As for the human interaction it is a mix of other mental issues, and the way I feel about people who can eat gluten. If they are not eating I have no issue talking with people. I mentioned I have issues accepting them as the same species when I see them eating. My reaction to gluten is so ingrained in me that it is not a food but a poison, that watching others eat it causes a subconscious reaction where I find myself avoiding them and looking down on them like something from another planet. I end up disgusted with them and walking away, I will go out of my way to avoid people and places where foods like this are present. This is my TRAUMA part of the gluten exposure, and one of the big things I am trying to address in my life right now. I know it is irrational to do so but I end up doing it, I have never cared about others race, religion, or looks, but if I see them eating a gluten/poison, it somehow changes how I perceive them and interact with them and I hate this part about me. It is taking a lot of mental effort to try to smile and treat them as a human, and not something to be looked down upon in disgust. I just recall that mental state that gluten puts me in with my mind and body turning against me and not doing what I will it and the fear comes back. This diet is pretty much like mine, I take Doctors best Magnesium powder in a tea that is actually brewed with st johns wort (never thought much of it) , I use Liquid Health Stress & Energy along with the Neurologic Support they have, twice-three times a day for B vitamins(along with a bunch of other supplements) . I can not digest meats or carbs well, meats it is a issue with breaking them down same with egg yolks, I literally just burp up the undigested meats hours later. I have found the only way to eat them is to boil/slow cook them til they melt then blend them into a broth and have it with digestive enzymes so only do it with turkey bacon, longhorn, and salmon in small amounts in soups or for flavoring stock for stir frys.  As for Carbs like rice and potatoes I end up getting really gassy and bloated, same with sugars in any amount greater then like the size of my thumb give or take. Oats I only have gluten-free Harvest in about a tbsp amount when tasting recipes of stuff I sell at farmers markets. So I eat mostly fats and protein from egg whites, nuts, seeds, veggies, and vegan protein powders blends balanced for complete proteins. I have at least 1-2 dried fig, dates, handful of banana chips, or a 1/4 of a small fruit with meals for fruits.  My meals are mostly egg white and veggie omelettes, stir frys, and soups, Always with lots of fats and proteins in each meal. I have found having nutritional yeast to help with my mood and energy levels also and find someway of having it in meals often. I keep my foods on rotation and keep getting updated feed back on ratios with my dietician. I also have a rather odd list of foods I can not eat due to allergies/intolerance.
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