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Gluten Intolerance Or Just Ibs/ Gerd?

carolinagirl

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carolinagirl Rookie
carolinagirl
Posted

Hello! I am new to this site & I have been going to and from different dr.s trying to figure this whole thing out. I had my Gallbladder removed in Jan 1999. Since then, I had the usual D after a high fat meal and then my "gasiness" for lack of a better term- began. I would not be that way all the time, though. Feb 2005, I got a horendous flu like stomach virus that almost killed me, literally. I am pretty sure there was nothing left in me at all after that, I had 3 seizures due to the absolute dehydration. After that, that year, I had so much D! I though this was weird as I have always been the opposite! The gas got worse and then the stomach burn started & a pain from my belly button to between my ribs. one GI Dr. said it was celiac disease, I tested neg. on blood test. I am currently wating on results on my genetic test from last week. My new GI dr. is certain I have GERD and I am going to get Enterolab since myinsurance won't pay much on the endoscopy. I have been gluten-free since Jan. I have had some gluten in my diet by accident with no complications sometimes & then other times, full of gas! What is weird is that I haven't had the horrible lower ab pain as others have described, jsut hte bruning ulce-like pain in my stomach. I am scared to test myself by eating gluten, because I know htat there are life-threatening complications. Has anyone had an experience similar to mine? should i be scared to do a gluten challenge? Thanks for the advice! :D

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tiffjake Enthusiast
tiffjake
Posted

Hi Carolinagirl! Welcome! My IBS seemed like a life sentince. Then I developed GERD so bad I thought I was going to die (often "throwing up" food after a meal, had to go on Nexium AND Reglan). I got an Lame Advertisement test for food intolerances that showed gluten. Through research, found out about celiac disease. You symptoms sound just like mine (though I never had a surgery that brought things on......).

The blood test may have been thrown off my a number of things. And there are people here that nad neg blood work, but positive EnteroLab or dietary response. My bloodwork was "borderline", but the EnteroLab was not, and neither was my Lame Advertisement or the genetic test! Any lab can mess up something.....

Anyway, if the gluten-free diet makes you feel healthier, then many people here would tell you to stick with it. If you NEED the testing from the DR (for further proof to yourself, or your family, or other docs) then you need to eat gluten to get the bloodwork to be positive. But I will say that when I tried to do a gluten challenge, it was so hard because my body had felt so good gluten-free, that when I did get sick, it was sooooo bad!!!! I made it 3 days, and gave up! I was laying on the floor in the bathroom crying......

But! There are other people here (and I will let them speak for themselves) that are almost 3 months into a challenge so they can have the endo. So that is really up to you. But I do hope you are feeling better, and welcome to the group!!! Night night, Tiffany

carolinagirl Rookie
carolinagirl
Posted
  • Author

Thank you for sharing your experience & knowledge. It is difficult to discern which problem you might have bc the symptoms are so similar. I got on Nexium last week & my reflux is a lot better, although still difficult to swallow. I think the main issue is finding a dr. who will work with you. Still waiting on my Prometheus blood test results for the gene. Am not sure if need to order Enterolab if they are negative???

Nancym Enthusiast
Nancym
Posted

Have you been checked for H. Pylori? It is the bacteria that causes ulcers.

carolinagirl Rookie
carolinagirl
Posted
  • Author

hi- No, I haven't done that yet. Do you know what is involved in testing for that? Thanks :)

Nancym Enthusiast
Nancym
Posted

I think H. Pylori is checked with saliva or breath, although I have heard of some people using endoscopy to check for it too. So, really... I don't know what is currently being used.

penguin Community Regular
penguin
Posted
I think H. Pylori is checked with saliva or breath, although I have heard of some people using endoscopy to check for it too. So, really... I don't know what is currently being used.

h. pylori is checked through blood (they've done this test on me about 8000 times :rolleyes: ), although they can look for it in an endoscopy as well.

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    • trents
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      By trents · Posted

      @KathyR37, I would suspect that in addition to gluten intolerance, you have other food intolerances/sensitivities. This is very common in the celiac community. The most common offenders are oats, dairy, soy, corn and eggs with dairy and oats being the big two. Have you considered this? Have you tried keeping a food diary to detect patterns?
    • Theresa2407
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      thank you for your advice.   I have always taken them and I use Stonehedge because they are in a glass bottle, but don't have to be refrigerated.  I also like they are 3rd party tested and state gluten free. But you never know if something better has come alone over the years.
    • KathyR37
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      By KathyR37 · Posted

      Thank you for your response. I have already learned about the info you sent but i appreciate your effort. I am the only one in my family cursed by this disease. I have to cook for them too. I make sure that my utensils are free of gluten and clean after using them for other food. I use non-porous pots and pans and  gloves when cooking for them. One huge problem I have is a gag reflex out of this world and if something doesn't taste good it is not going down. Most commercially made breads and such taste like old cardboard.Pastas are about the same. I did find one flour that I like and use it regularly, but it is so expensive! All gluten free food is way more expensive. I only eat twice a day because I cannot afford to buy all that. We live on a very low income so my food purchases are quite limited.
    • Scott Adams
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      What you've described—the severe weight loss, the cycle of medications making things worse, and the profound fear of eating before leaving the house—is a heavy burden to carry for 15 years. It is absolutely not your fault. While everyone's journey with celiac is different, the struggles with the learning curve, social isolation, and dietary grief are feelings many in the community know all too well. Your question about whether you should just eat what you want and manage the symptoms is a heartbreaking one, born from years of frustration. It's crucial to know that the diarrhea is a sign of ongoing damage to your small intestine from gluten, and simply managing the symptom with Imodium doesn't stop that internal harm or the risk of other complications. The fact that you are still getting sick within an hour of eating, even while trying to be gluten-free, is a huge red flag that something isn't right. This could be due to cross-contamination in your kitchen (e.g., using a shared toaster, colander, or condiment jars), hidden gluten in foods, or the possibility of another concurrent condition like refractory celiac disease. Don't give up!  This article has some detailed information on how to be 100% gluten-free, so it may be helpful (be sure to also read the comments section.):    
    • KathyR37
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      By KathyR37 · Posted

      I am new here but celiac disease is not new to me. I was diagnosed with it at age 60. At the time I weighed a whopping 89 pounds. I was so ignorant to celiac so I buried myself in learning all about it and looking for food I could eat. I lost so much weight and stayed sick all the time. So to combat the sickness I was give all sorts of meds for loose bowels and vomiting. All that just made me sicker. Eventually I chucked it all and went back to eating like I had all my life. Now I am from the south and biscuits and gravy are a big part of our food, as are breaded foods, pasta, and sandwich bread. Through the years I would try to do the gluten free thing again and am doing it now. It has not helped any. Within and hour of eating I have to run to the bathroom. I am now 75 and am wondering if I should just forget it and eat what I like, take Immodium and live the best I can. I cannot eat before going anywhere for fear of embarrassing myself. Family and church dinners are out of the question unless I eat and run straight home. I am so frustrated I just want to sit down and cry or throw something. Does everyone go through all this?
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