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i have been having all the symptoms of celiac since 1999.just was told it was celiac

Jane Phillips
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Jane Phillips Newbie
Jane Phillips
Posted

i have had these symptoms since 1999. i thought the shock of my husband dying did it to me. it continues all these years tho. i have eaten so much immodium over the years since that is the only thing that woud calm my diarrhea and cramps down, i took my mom to a gastro dr and asjked him before he left room what he thought was wrong with me. that i thought i might have ibs. he immediately said i think you are celiac. take all gluten out of your diet. plus eggs corn and anything else i have noticed has bothered me out f diet.  so i did and i got better. then today i ate with my mother and had corn and one piece of fried chicken. well i have been in bathroom since leaving her house. i did not dissect the food before eating. now im paying for it, of course as soon as i got hit with an attack i knew what had happened. the chicken was battered with flour and i ate corn,  so im back on high alert of all food again.

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trents Grand Master
trents
Posted

Welcome to the forum, @Jane Phillips!

Though gluten (a protein found only in wheat, barley and rye) is the kingpin food ingredient that must be avoided in celiac disease, many celiacs find there are other foods they do not tolerate well. Common among them are dairy, oats, soy and eggs. Some of these additional sensitivities often disappear in time as healing of the small bowel villous lining progresses, which can often take two years or more, even after going gluten free. 

Without formal testing, it is impossible to tell for sure whether or not you have celiac disease or NCGS (Non Celiac Gluten Sensitivity). They share many of the same symptoms. NCGS is 10x more common but there is no definitive test for it. Celiac disease must first be ruled out. But if you wanted to be tested for celiac disease you would need to go back to eating heavy amounts of gluten for several weeks or the testing would be invalid. It may not be worth it. At the end of the day, the antidote for both conditions is the same: total abstinence from gluten for life. 

It is easy to avoid "macro" amounts of gluten gut it is included in the food supply in so many ways that are hidden or not obvious there needs to be some education. Then there is the whole problem of cross contamination. Eating out safely is the biggest challenge. Here is a primer that may help: 

 

Scott Adams Grand Master
Scott Adams
Posted

Welcome to the forum! I'm sorry to hear about your husband.

Make sure that your mother and other first degree relatives also get tested for celiac disease, as 30-40% of first degree relatives also have celiac disease. 

Also, you can still have fried chicken, but it needs to be made with gluten-free ingredients. Here are some recipes:

https://www.celiac.com/search/?&q=fried chicken&type=cms_records2&quick=1&search_and_or=and&search_in=titles&sortby=relevancy 

 

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    • WildFlower1
      Contradicting length of time for gluten challenge - please help to ensure not getting false negative. Thank you!

      By WildFlower1 · Posted

      Thank you for the reply! Doctors over the years have tested me for everything under the sun and tests are normal, except the decreasing bone density, high FSH (in regards to infertility), lower iron, and all the other celiac symptoms I experience. When I was 15 the infertility started (my whole life growing up I always ate gluten, and always had severe stomach problems, I’m an adult now and I still remember the stomach pain as a child) and then from here, they couldn’t figure out why. At the same time I was having all these celiac symptoms but nobody ever put two and two together.   Eventually in adulthood I went off gluten and dairy and felt better. Later in life, the topic was brought up by doctors, but they could never actually test for celiac because I was off gluten for years.   Just recently multiple doctors brought it up again, and said I should rule it out. So the ruling out of celiac, which is direct correlation with these symptoms, infertility at a younge age, on the edge and getting into osteopenia, etc. etc. is the concern. I was off of dairy for the same time as gluten because it made me sick. I did not surely have adequate calcium/D intake as well over these years.   The matter of concern is to once and for all get celiac ruled out for my own health, a gastro doctor recommended I get it done and other doctors to confirm yes or no to officially rule it out.  For these 6 weeks I have not been eating enough gluten then it seems, if 2-3 slices of bread a day is not really enough. I should increase my intake of gluten then and extend the test time?   Thank you very much for your help!! The test for Immunoglobulin IgA being a value of —> “1.25” shows it is in the normal range of 0.54-4.17 g/L on the test. 
    • trents
      Contradicting length of time for gluten challenge - please help to ensure not getting false negative. Thank you!

      By trents · Posted

      Welcome to the forum, @WildFlower1! The reason you are seeing conflicting results when you research the length of time recommended for doing the "gluten challenge" is that the guidelines have recently been under revision. So there are two components: 1. amount of daily gluten consumption and 2. duration of that amount of daily gluten consumption Recently, the guidelines have been under revision because the medical community was sensing the previous standards were too relaxed, particularly in the daily amount of recommended gluten consumption. The more recent guidelines seem to be calling for higher amounts of daily gluten consumption over (perhaps) as shorter period of time. So, it is becoming a daily minimum of 10g of gluten daily (about the amount in 4-6 slices of wheat bread) for a minimum of two weeks. Personally, I would recommend that amount of consumption be extended from two weeks to four weeks to ensure valid testing. Your Immunoglobulin IgA at 1.25. Was that within normal range? If that one is low, you are IgA deficient and other IgA test results cannot be trusted. But regardless of whether or not you have celiac disease or NCGS (Non Celiac Gluten Sensitivity) the antidote is the same, namely, a gluten free diet. What would you do different if you had a more confident differential diagnosis? And there are other reasons for the development of osteopenia/osteoporosis that you probably should explore. Are you on any serious supplementation for D3 and magnesium?
    • WildFlower1
      Contradicting length of time for gluten challenge - please help to ensure not getting false negative. Thank you!

      By WildFlower1 · Posted

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    • WildFlower1
      Contradicting length of time for gluten challenge - please help to ensure not getting false negative. Thank you!

      By WildFlower1 · Posted

      Hi there, I have been scouring the forums, medical journals, celiac websites, speaking to my doctor and there seems to be a contradiction in the exact amount of time one must do the gluten challenge for a blood test. Let me please express my gratitude for taking your time to help! I will try and keep this short. In a nutshell, I am positive genetically for celiac. Previously for many years 10+ I have been on a strict gluten free diet. At a very young age, I had infertility, hair loss, low iron, stomach problems, neurological symptoms, continued low bone density etc. etc. all the symptoms that line up with celiac.  I could never get an “official diagnosis” because I was not eating gluten for years.   Recently, I had a bone density scan, and was shocked at the results. I am young and my low bone density is continuously lowering. This lead me  to seriously consider doing the celiac blood test to confirm if I actually have celiac. Years ago, I had an endoscopy and they did a biopsy saying it was negative for celiac - but I had been on a gluten free diet for years. Now, I asked my doctor if I can start the gluten challenge and get this over with. My doctor said two weeks then get the blood test. I have been having 2-3 pieces of bread daily. After four weeks of doing this, I went for the bloodwork - it came back negative for celiac. I am continuing to eat bread daily, it has now been over 6 weeks. I am not able to get an endoscopy. Please, from your experience how long really must I eat bread daily to ensure I do not get a false negative blood test for celiac? I have read up to 12 weeks. One doctor advised this is foolish to even do this gluten challenge as I am damaging my body. My other doctor said 2 weeks eat it, but it showed negative. But with my recent continuous lowering of bone density I personally need to rule celiac out.   Thank you VERY much for your help, I truly appreciate it!!
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