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7 posts in this topic

I have been recently doing much research into different health issues and was led here. I was hoping someone could help to steer me a little bit. My health story, as brief as I can make it is: started noticing symptoms like chronic and debilitating fatigue, joint pain and brain fog after the birth of my first baby almost six years ago. I thought it was just being a new mom but it never went away. My first doctor visit was one year later and found out shortly after that I was expecting, so I chalked it up to being pg again. After birth of baby #2, symptoms remained and I went to three differnt drs about 6x over the last 4 yrs. Symptoms now include bloating, cramping, gas, pain in my wrist bones and knees, and easy bruising. Also I am having a hard time losing some extra weight and we have been having a hard time getting pg again. (It ususally takes me about 3 months to get pregnant, and we've been trying for almost a year now). I have always had to direct my doctors in suggesting what might be wrong with me. I have been tested for lyme, arthritis, anemia, thyroid and gluten intolerance (twice). My test results for that were as follows:

1st test 1 1/2 years ago - Gliadin IgG was 14.9 (<25 = neg) and Gliadin IgA was 5.0 (<25 = neg)

2nd test in Nov 04 - Gliadin IgG was 22.9 (<25 = neg), Gliadin IgA was 4.9 (<25 = neg), and endomysial IgA was neg.

Both times these test were done I had been gluten free for at least two weeks. I was wondering if that could affect the results, and if the tests I had done are reliable. I notice that when I go gluten free, my symptoms go away - but my doctors have told me it's basically all in my head. I'm getting very frustrated and sad, because my fatigue is so extreme that there are days I can only lay on the couch while my children entertain themselves.

Autoimmune diseases (rheumatoid arthritis, diabetes, and thyroid disease) are abundant in my immediate family and I just recently found out I am allergic to rice, dairy, nuts and some grains (as is my dad). Is celiac an actual allergy? The allergy test I had done measures whether my body is producing histamine in response to a certain food by measuring IgG antibody production. If I had a gluten intolerance would it have registered on this test? I'm trying to make sense of my symptoms. It's really hard to be commited to eliminating gluten (it's in everything!) when my doctors have said that is not my problem, even though I notice positive dietary results. I wonder if it's something else I am reacting to, and not the gluten. I don't trust myself anymore because the doctors have proved me wrong with every idea I come up with in terms of what is affecting me. They have told me it's either depression (I love my life and only feel depressed when I imagine feeling this horrible for the rest of my life), not enough exercise ( I work out 5x a week), or a sleep disorder (does that really cause cramps, bloating and gas?).

Any direction or help would be greatly appreciated. I'm learning to rely less on my doctors and more on what I know to be true with my own body, and the experiences of others. Thanks in advance!

Sorry, I tried to make this short but see how long it is now!

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Wondering--

Well, you definitely have a lot in common with other Celiacs! For one, you noticed your symptoms (which can be from Celiac), after a pregnancy, which is when some women notice their Celiac being triggered initally. All of your more recent symptoms are common for Celiacs too...the only one I haven't heard mentioned myself is bruising. (Do you have swelling of the ankles too ? Random question...)

Being gluten-free before receiving your blood test can definitely affect your results. For the most accurate results you need to be consuming gluten for several weeks. (Someone else can maybe give more info on how long is needed to eat gluten before rcving a test...)

Don't let your doctors discourage you by saying its all in your head--whether you have Celiac or something else--your symptoms are definitely not in your head ! Some doctors use that kind-of response when they are stumped. Try a new doctor if need be. If you let us know your area, someone might be able to recommend a doc for you.

Autoimmune illness (especially thyroid) and other food allergies are common for Celiacs. Celiac is not classified as an allergy however. It is an autoimmune disease where your immune system damages your small intestine when you consume the protein gluten, found in wheat, barley, rye and "oats". Go here to read about exactly what Celiac Disease is: http://www.endo-world.com/celiac.htm#1

Glad you have joined us here and that you are taking your health into your own hands. As you will soon find, that is what many of us here have had to do! I'm sure others will respond to you soon. But I suggest, finding a new doc if you need to, and get tested again after consuming gluten for a period of time. There are other labs that will test you also, besides using your doc. There are also several things you need to be tested for. I'll let Kaiti post those specifics, b/c she's good at it :)

Good luck to you, and keep us updated on your process !

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Looking at the tests you had done you did not get the full panel you should have received. You do need to be on gluten during testing or it will affect your test results.

This is the panel you should get and the tTG is the most specific and sensitive test for celiac.

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG) IgA

Total Serum IgA

If all of your testing you get done shows negative then it's possible that you a gluten intolerance and just not full blown celiac yet.

The symptoms are definitely not in your head so as Jen said, do not let the doctor tell you otherwise. You may in fact want to consider another doctor who may be a bit more informed about celiac. You'll find that alot of doctors don't know what they should about it. Also, pregnancy and childbirth can trigger celiac to activate.

Have you had your thyroid checked? I have graves disease (hyperthyroid) and thyroid issues are common among celiacs. In fact, my endocrinologist told me that she rarely sees celiacs with just celiac.

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regardless of what your (likely not-well-educated on celiac) doctors say, the dietary challenge is a test in and of itself. if you know what makes you feel better, stick with it!

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"I'm learning to rely less on my doctors and more on what I know to be true with my own body, and the experiences of others."

Same here. I don't have a whole lot of faith in doctors since I was told that my DH was "all in my head". Please.

If you feel better on the gluten-free diet, by all means continue it no matter what the doctors say. Many doctors aren't willing to accept that food intolerances can cause serious health problems.

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Vitamin K deficiency can cause easy bruising. I use an injectable medication so, needless to say, I noticed it right away! :blink:

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regardless of what your (likely not-well-educated on celiac) doctors say, the dietary challenge is a test in and of itself. if you know what makes you feel better, stick with it!

Ditto Tiffany!!

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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:
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      St Johns Wort daily.
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      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.
       
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