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Gluten Challenge Before Endoscopy
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34 posts in this topic

I caused part of this myself by assuming when I was done with the blood test, I could stop eating the gluten. I didn't realize you needed to keep eating it for the endoscopy.

You caused nothing. There is no way you could have known not to remove gluten unless your doctor told you -- during my diagnosis process I found out the same way you did - someone on this board told me that I shouldn't remove gluten until all testing was complete, including endo. I was very thankful of that knowledge when I had my first appointment with my Celiac GI - he would have made me challenge for an additional six weeks.

I do regret that our discussion has complicated an already confusing diagnosis process - exactly what I try to avoid.

You have my apologies and sincere wishes that the your last days of ingesting gluten pass quickly - you are right that you already have the most important piece of info - you improve gluten-free. Obtaining a diagnosis can be important for many reasons, so stick it out if you can.

Take care :)

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You caused nothing. There is no way you could have known not to remove gluten unless your doctor told you -- during my diagnosis process I found out the same way you did - someone on this board told me that I shouldn't remove gluten until all testing was complete, including endo. I was very thankful of that knowledge when I had my first appointment with my Celiac GI - he would have made me challenge for an additional six weeks.

I do regret that our discussion has complicated an already confusing diagnosis process - exactly what I try to avoid.

You have my apologies and sincere wishes that the your last days of ingesting gluten pass quickly - you are right that you already have the most important piece of info - you improve gluten-free. Obtaining a diagnosis can be important for many reasons, so stick it out if you can.

Take care :)

Well said....and I agree completely. We are here for you and we are trying to give you our very best advice.

Best wishes to you.

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? :huh:

My comment that the two-challenge GI isn't what I would call a "good GI" is somehow seen as a personal attack on YOU? :rolleyes:

I find it hard to believe that any unbiased third-party observer would call that "picking a fight".

Boy, what a train wreck this thread has become! Ya know, Tom, Irish and GottaSki have offered up phenomenal advice to the OP and yet, you keep on

making attacks and challenging everything they say. I mean, really, what the hell is your problem? Who pee'd on your Cheerios this week? :blink:

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Well said....and I agree completely. We are here for you and we are trying to give your our very best advice.

Best wishes to you.

Thank you, IrishHeart. I appreciate the advice! I am learning a lot and everyone is making this process better -- I don't feel so alone. :)

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You caused nothing. There is no way you could have known not to remove gluten unless your doctor told you -- during my diagnosis process I found out the same way you did - someone on this board told me that I shouldn't remove gluten until all testing was complete, including endo. I was very thankful of that knowledge when I had my first appointment with my Celiac GI - he would have made me challenge for an additional six weeks.

I do regret that our discussion has complicated an already confusing diagnosis process - exactly what I try to avoid.

You have my apologies and sincere wishes that the your last days of ingesting gluten pass quickly - you are right that you already have the most important piece of info - you improve gluten-free. Obtaining a diagnosis can be important for many reasons, so stick it out if you can.

Take care :)

Thanks, Lisa! No apologies necessary. Not your fault that things went sideways here. I'm going to keep going and at this point I feel like I will make it. Just keeping my eye on the big goal. When I have my consultation with the GI, I'll tell her how hard this is on my system, and hopefully she'll schedule the endo quickly. I'm very grateful for all of your help!

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Thank you, IrishHeart. I appreciate the advice! I am learning a lot and everyone is making this process better -- I don't feel so alone. :)

You're not alone now. You have us. ;) We care. Keep us posted.

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I too am new to this. I have seen doctor after doctor begging for help. They all treated me for individual symptoms. I am 38 years old. I've been on rx for 8 years for reflux and have been diagnosed with Barrett's Esophagus. I have also been on rx for hypothyroidism for 3 years. I was extremely lethargic and seemingly depressed. So then came the rx for that. Next muscle and joint pain. Another pill for that. Then blood pressure, so another pill. All the while, of course I had stomach issues, and all of these symptoms are related. No one was looking at the big picture. I finally went to a chiropractor. She suggested that maybe I had a gluten allergy. I haven't eaten gluten since 9/11/12. I am like a new person. Energy, back to my happy self, no blood pressure issues, joint and muscle pain gone.

I saw my GI last week and asked for Celiac testing as they had never before done this with previous EGD's or colonoscopies. The blood work was negative. I asked to be scheduled for the EGD and biopsy b/c I feel certain its celiac. I even asked if I needed to "contaminate" myself between now and the biopsy bc I had read such. Doc said not necessary. But from all of your posts, I'm thinking he's way off!! My test is scheduled for 11/19. Since I've only been gluten-free for a little less than 2 months, what do you think? If I keep eating gluten until day of test, should my test be accurate?

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I saw my GI last week and asked for Celiac testing as they had never before done this with previous EGD's or colonoscopies. The blood work was negative. I asked to be for the EGD and biopsy b/c I feel certain its celiac. I even asked if I needed to "contaminate" myself between now and the biopsy bc I had read such. Doc said not necessary. But from all of your posts, I'm thinking he's way off!! My test is scheduled for 11/19. Since I've only been gluten-free for a little less than 2 months, what do you think? If I keep eating gluten until day of test, should my test be accurate?

My GI said that 2 pieces of bread a day for 3 weeks is enough. Although to be fair, I'm not crazy about her.

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    • Advil (ibuprofen) is gluten-free, but can be a stomach irritant, especially if taken on an empty stomach. That said, I will also place my bet on the garlic and onions. As Raven said, eating more than once a day may also help. An empty stomach is likely to be an irritable stomach.
    • Another link: http://naldc.nal.usda.gov/download/7351/PDF
    • Thanks for posting.  I know it is difficult to talk about these sorts of things even on a webforum.  It is good thing for people to be aware though about celiac disease and that it can cause mental problems.  Gluten can cause brain damage and it can cause anxiety. If the brain does heal it may take a long time. I know that gluten can cause anxiety and obsessive thoughts.  My experience has been similar to your experience. When I first quit eating gluten I had a similar constant loop and strong negative feelings. There are lots of people on this forum who get anxiety when they eat gluten. Some people also experience gluten withdrawl where they experience anxiety after giving up gluten. It can take a long time for the body to heal and for obsessive thoughts to go away.
       It is normal for people to socialize with each other and to be comfortable about it. You said you have problems still socializing and being around people. It might be a depressing thought but it sounds to me like you still have problems with anxiety.  I would recommend considering what options you have available to treat the anxiety. When I quit eating Gluten I still had some symptoms, even though I felt much better. I have been slowly recovering over a period of about three years. I had obsessive thoughts even after I quit eating gluten.  Now I very rarely if at all think about those things. My experience is that my mind would latch on to certain things that caused me anxiety and focus on those things. Sometimes my focus would shift and I would latch onto other things. My ability to socialize has also improved greatly with time. I have made some dietary changes which I believe have helped greatly. It sounds to me like you have obsessive thoughts about things and maybe some brain damage. My experience has been that my obsessive thoughts about different things went away with time. I feel my obsessive thoughts were caused by gluten and not by what people did around me or any events. As my brain healed I became more self aware and things became less stressful.  I can't give medical advice on this forum but I can talk about my current diet and my experience with celiac disease. My experience with gluten is different from a lot of other people so it is a good idea to ask other people and to talk to a doctor.  I avoid oats and avoid almost all processed foods. I buy certified gluten free food. I eat healthy and I exercise every day. I take st John's Wort as I have read studies that say it may be as effective as some other anti-depressants for treating certain types of anxiety. It is available over the counter. I started with a small dosage and then stepped it up over time. I think it helps a lot.  This is also something that you should talk to a doctor about first. https://www.researchgate.net/profile/Martin_Mahoney2/publication/7426926_St._John's_wort/links/540d8acc0cf2f2b29a386673.pdf A lot of people with celiac disease have vitamin deficiencies.  Vitamin b deficiency can cause anxiety. Some people do not process the synthetic form of vitamin b (from normal pills)  very well, and do better on an activated form of vitamin b. I take:
      1 activated vitamin b12 daily
      1 activated vitamin b6 every once in a while. 1 regular vitamin b multivitamin
      1 magnesium pill every day.
      St Johns Wort daily.
      1 zinc vitamin daily
      I drink lots of Chamomile tea and decaf coffee. I avoid most caffeine. 
      I think each of these helps lower my anxiety level.  I eat fruit with every meal. Canned fruit from walmart is cheap and good for you. I eat salad and and vegetables and avoid dairy.  I eat frozen fish often as it has healthy proteins. Eating healthy is very important. I eat potatoes and rice. http://www.livestrong.com/article/454179-what-is-methyl-b12/ I avoid eating soy sauce, soy, cheese, aged meats and fermented foods (I do drink certain types of alcohol in moderate amounts.) These foods contain lots of Tyramine. I might (or might not) have "monoaine oxidase deficiency" and if so high Tyramine foods should be avoided.  I thought I might have problems with elevated ammonia in my blood, but I am not convinced of that anymore. I limited my consumption of meat for a while as well as dairy but I am not sure if i helped.  I have heard that Celiac disease can effect other organs besides the brain and those organs can have an effect on the brain.  My current diet is working so I am going to stick with it for now. I try not to worry about things that are outside of my control. Be patient as it took me a long time to recover.  Let me know if you have any questions. There is a lot of information on this site and people who are willing to help.
       
    • Thank you. This is really helpful. I will call around next week.  I just want to heal! 
    • My endoscopy showed i had decreased folds in my duodenum. The biopsy came back and showed that my villi were fine... i have been on a gluten free diet for 6 years because i was just told i was intolerant but never had any testing before. when i eat gluten i get sick for 2 weeks. i came down with issues of other foods in march so they were trying to figure out why and wanted to know if i had celiac are not because that would explain why dairy and fructose are a problem.. both intolerant test for both were negative but the fructose test made me extremely sick but it was negative...      Im trying to figure out why i have decreased  folds in the first place. my Gi doctor is stumped on that to why the endoscopy would show damage but the under the microscope are fine. She is going to call the dr who did my scope and then is supposed to get back to  me..    would being gluten free for 6 year make it so there was damage and then my vili are now fine but still cant be seen in the endoscope?
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