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marycubs

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marycubs Rookie

Hi -

I am rather new to this board - have not yet been 'officially' diagnosed with celiac disease; had my endoscopy/biopsy last week and am waiting for the results. However, I believe that celiac disease is the correct diagnosis, based on my blood tests, my symptoms, etc. I am still very much in the learning phase !! ;)

My question: from reading these posts, it seems that once you go gluten-free, if you accidently ingest any amount of gluten your body reacts very strongly. Does any one know why that is ? Do our bodies become hypersensitive to the gluten ?? Are there any articles or books that you recommend I read to get me up to speed on this disease ?

Also, did any of you not experience celiac disease until mid life ? While I have dealt with anemia, headaches, fatigue for several years, I did not have any digestive problems until a few years ago (I'm 42 now). Is that unusual ? It seems that many of you have been dealing with full blown celiac disease for years.

thank you ! This site has been very helpful ! :rolleyes:

Mary


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debberdee Newbie

I am new to all of this so please excuse me for not answering all of your questions. I simply don't have the answers. What I do know is that you need to read everything you can get your hands on. As far as onset of symptoms, I am 45 and was recently diagnosed. Symptoms do vary! I was diagnosed with fibromyalgia in the early 80's. I have had osteoarthritis since childhood. My gastro problems did not get bad until my late 30's. I also started having symptoms that my doctors thought were MS! Went through a myriad of tests for that until my doc decided to test for celiac disease. NOW, I believe ALL my symptoms were from celiac disease! and that I have had it since childhood! The fatigue itself is a major symtom as well as the anemia. For info go to Celiac.org and also do searches on the web for info on celiac disease. lots of info on the net. I have also read several books. Go to your library and I am certain you should be able to check out books that will be helpful. Good luck to you and to all of us still searching for answers! :rolleyes:

KaitiUSA Enthusiast

I did not react strongly at first but now however I do. The longer you are off of gluten the more sensitive to it you become.

Your body is used to not having gluten then you have gluten and are giving it something it does not tolerate and your body will let you know about it.

Some people however just never get symptoms so it depends on the person.

Not all people have digestive symptoms and you do not have to have digestive symptoms to have celiac...you don't have to have any symptoms at all.

Anemia, fatigue, and what you named are all symptoms of celiac. There are over 200 symptoms that can be involved with celiac and not everyone had the same ones.

lovegrov Collaborator

Sensitivity after going gluten-free depends on the person. I never have gotten more sensitive.

richard

tarnalberry Community Regular

I haven't gotten signficantly more sensitive, but some. (Then again, if you walk around with your nose stuffy all day, do you notice it getting a little more stuff? Not nearly so much as if you nose clears, and then gets a little stuff.)

I was dx'ed at 24, and may have had it for two years or so prior to that, but I don't believe I had it in childhood, but had it triggered due to a long bout of repeated respiratory infections and the subsequent treatment.

marycubs Rookie

Thanks for the replies

I just heard my results from the endoscopy - and I am now confirmed with celiac disease.

I'll have to read and learn to be gluten-free and I hope for better health in the near future !

:)

Mary

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    • trents
      Not necessarily. The "Gluten Free" label means not more than 20ppm of gluten in the product which is often not enough for super sensitive celiacs. You would need to be looking for "Certified Gluten Free" (GFCO endorsed) which means no more than 10ppm of gluten. Having said that, "Gluten Free" doesn't mean that there will necessarily be more gluten than "Certified Gluten" in any given batch run. It just means there could be. 
    • trents
      I think it is wise to seek a second opinion from a GI doc and to go on a gluten free diet in the meantime. The GI doc may look at all the evidence, including the biopsy report, and conclude you don't need anything else to reach a dx of celiac disease and so, there would be no need for a gluten challenge. But if the GI doc does want to do more testing, you can worry about the gluten challenge at that time. But between now and the time of the appointment, if your symptoms improve on a gluten free diet, that is more evidence. Just keep in mind that if a gluten challenge is called for, the bare minimum challenge length is two weeks of the daily consumption of at least 10g of gluten, which is about the amount found in 4-6 slices of wheat bread. But, I would count on giving it four weeks to be sure.
    • Paulaannefthimiou
      Are Bobresmill gluten free oats ok for sensitive celiacs?
    • jenniber
      thank you both for the insights. i agree, im going to back off on dairy and try sucraid. thanks for the tip about protein powder, i will look for whey protein powder/drinks!   i don’t understand why my doctor refused to order it either. so i’ve decided i’m not going to her again, and i’m going to get a second opinion with a GI recommended to me by someone with celiac. unfortunately my first appointment isn’t until February 17th. do you think i should go gluten free now or wait until after i meet with the new doctor? i’m torn about what i should do, i dont know if she is going to want to repeat the endoscopy, and i know ill have to be eating gluten to have a positive biopsy. i could always do the gluten challenge on the other hand if she does want to repeat the biopsy.    thanks again, i appreciate the support here. i’ve learned a lot from these boards. i dont know anyone in real life with celiac.
    • trents
      Let me suggest an adjustment to your terminology. "Celiac disease" and "gluten intolerance" are the same. The other gluten disorder you refer to is NCGS (Non Celiac Gluten Sensitivity) which is often referred to as being "gluten sensitive". Having said that, the reality is there is still much inconsistency in how people use these terms. Since celiac disease does damage to the small bowel lining it often results in nutritional deficiencies such as anemia. NCGS does not damage the small bowel lining so your history of anemia may suggest you have celiac disease as opposed to NCGS. But either way, a gluten-free diet is in order. NCGS can cause bodily damage in other ways, particularly to neurological systems.
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