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O.K. Here it goes. I thought I was diagnosed with celiac disease in Feb. I have been gluten free since then. I had blood tests done. My results were....IgA 14, IgG 41 and IgA 2. I am 45 and have had fibromyalgia for years, osteo-arthritis most of my life, so many gastro-intestinal problems that I won't list them, Started having what the doctors thought were MS symptoms abot 18 months ago! and the list goes on and on! I have also had allergy testing....allergies include.....eggs, yeast, dairy, malt and wheat. I feel great on the gluten-free diet. I have had all five of my children and husband tested, mom still waiting for results 3 of my 5 children have #'s larger than mine on the tests but my 22 year old says we don't have celiac disease. She has been to 2 different doctors and they have said her #'s mean nothing! She is making me crazy! Won't let up on how wrong I am and how right she is! Anyway, I feel better physically than I have felt in my whole life. I just need some input!

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What your mom thinks doesn't matter, period. You know what you need to do for your own health; you live in your own body. Keep doing what you need to do to feel healthy! :-)

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I am new to this posting stuff! Maybe I am doing it all wrong. I thought I posted a reply but lost it! Anyway, I think I confused the situation. It is my daughter who is armed with ALL the knowledge(!) She thinks my doctor is wrong. 3 of my five children have #'s on their blood tests higher than mine. My husbands #'s also came back showing similar results. It is my mom who is still waiting dor her eesults to her blood tests. I continue to get phone calls from daughter questioning everything I do concerning what I thought was my celiac disease diagnosis.

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So your blood test came up high and your daughter says you don't have it? I'm sorry but she sounds wrong...you have alot of things connected with celiac..osteo-arthritis, fibromyalgia, and gastrointestinal symptoms and then a high blood test...numbers do mean something...when they are elevated you have celiac...doesn't matter if they are alot over or a little over. Maybe she is in denial.

If you feel better go with that and don't let anyone tell you otherwise. Only you know how your body reacts to foods so stick with it.

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Thanks, Katie!

Yes, that's what my daughter thinks. Her blood tests show elevated levels as well but her GP and a specialist have told her the #'s mean nothing! It's just that I have 3 other children with elevated #'s and am trying to help them, as well. Two of those children are still teens and living at home. I know from all the postings that I have read that I am not alone when it comes to people not understanding celiac disease, but................right now I am in the HOT SEAT and it is very uncomfortable! :blink:

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Her blood tests came back high and her doctor said it was nothing????? GET HER A NEW DOC...alot of doctors don't know what they should about celiac and he seems to be one of them

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Sorry for the typo, but the advice still holds. It doesn't matter what your daughter thinks on the issue. In fact, it needn't even be a topic up for discussion. I know you want to help her with your numbers, and the most you can do is give her accurate information and accurate resources. Beyond that... you can lead the horse... you can't make it drink.

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Thanks for your replies. I am a mom and probably need to be in re-hab for being a "chronic fixer"! I know I can't change how my daughter feels> She just gets under my skin and is able to push my buttons and then I get confused and don't know quite how to respond to her comments. Don't get me wrong, she's a wonderful daughter! I am so proud of her. She is a very gifted and intelligent individual! I am just wondering if anyone knows exactly what the #'s mean. I keep reading everything I can find about celiac disease and it seems that there is mixed answers everywhere. Does this just go along with the disease? Oh, Yeah, Sorry I mis-spelled your name Kaiti! Again, thanks for trying to help a confused ol' lady!!!!! :huh:

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There are always questions along with celiac. I do believe that there are some blood tests that test specifically for celiac and have a there is very rarely a false positive. The gene tests are good to have done for celiac too. Biopsies can be good but if you don't have damage yet that can come back negative so again that can leave another confusing answer.

I think maybe your daughter doesn't want to think her or you guys could have celiac or maybe she just believes the unhelpful doctor . Would she listen to a doctor who knows alot about celiac or not?

My family(extended) is great, but they are stubborn when it comes to being tested and so forth so I can understand what you are going through.

Maybe you should have her come to this board....I know people on here know more then alot of these doctors

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A lot of family members of people on the board seem to have a blind spot when it comes to being willing to believe they may be gluten intolerant, so you're not alone. It still sucks, I'm sure. :-( If she has that much faith in the medical community, I agree with Katie's suggestion of seeing if you can find a doctor who's well versed in celiac disease for her to talk to.

Good luck toughening those buttons! ;-)

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    • 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?
    • Spicely Organics has both cassia and true (Ceylon) Cinnamon and are certifed gluten free along with the rest of their spices, as to tea Republic of Tea has most of their products tested and certified gluten-free also. You can visit their sites or try Amazon.
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