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Going To The Doctor...
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5 posts in this topic

Hi friends. I'm going to a new doctor to get a second opinion. I've been gluten free almost 5 months and am still experiencing gastrointestinal symptoms on a very strict gluten free diet. Some symptoms include extremely fatigued, rapid and irregular BM's and flatulence. This stinks. I'm grateful for any words of wisdom. Thank you.

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Have you been tested for dairy? soy? Corn?

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Have you been tested for dairy? soy? Corn?

No, ma'am, I haven't. I've been off of dairy, too. I have wondered if it could be corn or eggs...not sure.

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For the fatigue; have you had your iron and ferritin checked? How about your thyroid? Vitamin D? All of these can contribute/cause extreme fatigue.

As for the other symptoms things to consider: gallbladder problems, other food intolerences, SIBO, yeast, possible CC? Just food for thought.

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Mamaw is right--other allergens could be additional culprits.

You should also look into possible additional sources of being trace glutened too. I had to stop using my oven since the self cleaning cycle did not work. I bought a largish dedicated toaster oven to replace it. I also had to stop using lip balm (I use petroleum jelly), change my lipstick, and change out all my soaps and lotions, including what I use to wash my floor with and dishes. I also had to start washing my hands a lot before putting them to my face since one can get trace gluten from shaking people's hands as well as from doorknobs etc. etc.

Finally, after much time, I discovered I am also salicylate sensitive. This is a huge category since salicylates are in a lot of fruits and vegetables as well as nuts, seeds and herbs (including spices). Much like aspirin, it protects the plants from the elements. It can mess with a person's intestines as well as the nervous system, liver and skin. It too damages the villi in the intestines (i.e., besides the gluten). Corn and coconut by the way are high in salicylates, whereas brown rice is safe. Am hoping you don't have this. Though if you do have this condition it is far better to know about it than not. If you decide to investigate this possibility, its best to drink spring water since filtered water usually filters through coconut based charcoal.

Might be best to keep a food diary and note how you feel before and after you eat. Taking your pulse before and after and then a couple of hours after you eat can also give you some good clues. Going on a simplified basic diet can help initially to make your determinations less complicated.

Go luck in your detective work!

Bea

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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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