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Eri82

Branded Non-Celiac Gluten Intolerant But Still Wondering...

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Well, let me go back at when I was a kid. The first thing was I started getting BAD migraines at 7 years old, ALWAYS constipated at 6. I was other than that a happy and active child. But when I hit about 12 (still with those symptoms though) I would notice more and more I couldn't keep up energy wise with my peers. Why could they run forever and I was wheezing and had to sit down-I devoloped asthma at the time and used an inhaler. While I never was overweight at all up until my early teens, at 13 I craved junk like madness! Even though my well meaning parents would try to curb this, I would still sneak food. While I was able to somewhat get a handle on it, I was always 10-20 pounds overweight as a teen. Ok, get to 16 years old. I went to Japan for 2 weeks as a summer homestay. I ate mostly rice, and found I had quite a bit of energy to walk around Tokyo! When I got back and ate bread, I noticed (ok, this is really gross) that I got very oily stools for a few days. At that time was getting really bad reflux, one of the foods that would give me reflux was whole wheat When I was 18, something snapped and I felt really, really, really tired-ALL THE TIME. Just fatigued, heavy feeling. Now, at 28, the fatigue and heaviness was making it so it was hard to get through the day, even hardly doing nothing. My joints&muscles would randomly hurt, I was foggy headed, migraine prone, and will I was still always constipated, I would get unexplaned diarhea every now and then. My stools were oily and streaked with mucous all the time (sorry to be gross, again!)After eating bread, I would feel flushed, more tired and brain fogged. During that time, my weight shot up because I HAD TO HAVE fatty junk food. And, I had 2 miscarriges, both times were the fetus could not grow properly, and lost them in the 1st trimester.My hair and nails were always brittle-I could never grow them out due to shattering.I was also on the anemic side too.My reflux had gotten so bad I stopped eating whole wheat 3 years ago, and now even white bread was giving me a sour stomach.I also devoloped BAD allergies a few years ago, and needed shots, and excema made a vicious comeback (I hadn't seen it since I was 7)I was DESPERATE to get a handle on my life, and feel normal again!! So, I read about celiac, and that was me to a T I thought!! So I went to a doc whoo ordered a blood test for celiac, and it was----bum-bum-bummmm- negative!!! He did want to scope my small intestine, but being short on cash I declined. I talked to my allergy doc, and he told me the surest way to know if you can't handle a certain food is to take it out for a while, and then reintroduce it and see how you react. So, I went off of gluten. My God, the heavy fatigue was gone! Joints and muscles stopped hurting, reflux was easier to handle, I wasn't so gassy, and my face looked less swollen and red. I felt like I swapped bodies with a really healthy person!! So, the day I had eat some gluten, I ate a tablespoon of flour. I felt horrible, the same symptoms that plauged me came back. But something else happend-I got an allegic reaction! Red face, swolled lips, and hives! So, it looks like I am non-celiac gluten intolerant/wheat allergic. But, how could it not be celiac, especially the miscarriages, poor hair and nails, anemia prone, and insaine cravings for fatty food?????? What gives???I am now gluten free, and I feel like me old self from 10 years ago. No, more joint &muscle pain, my tummy is slowly starting to snap out of it, my junk food intake is 90% down, no more brain fog, flushing,my friends and family say I have a whole new contenance.,

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Welcome and I'm glad you're feeling better.

The blood tests for celiac have a fairly high false negative rate. It's estimated at 20%. You could still be celiac. For you there is essentially no difference since you sound like you are healthiest on a celiac diet. I was never formally diagnosed, but I don't worry about it. I eat a celiac diet and the more careful I am about gluten, the better I feel.

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I have a strong, nagging feeling that the blood test was either a false negative or celiac was too mild to put a blip on the test. While its 100% diagnosed I have a gluten intolerance/wheat allergy, I would like to find out if I have true celiac, so I can find some closure to the reason of my miscarriages, as I would like to have another baby in the future. Do you think its not bad idea to get the blood test again in the future ( I understand I would have to re-gluten for this) What do you think?

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That must be hard with the miscarriages. I think you are truly celiac and you risk getting really sick glutening yourself back up, especially with the new wheat allergy. You still may get a negative blood test. Some people just don't seem to send antibodies out into the blood very much, even if they're really sick with celiac. Can you qualify for the genetic test on your insurance? That might give you some idea.

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I think the strong, nagging feeling is probably right on. Many people with gluten intolerance will never test positive for the celiac tests because they only test for one specific type of gluten intolerance. There is such a thing as non-celiac gluten intolerance, which is just as real and harmful as celiac disease, but does notshow positive on the tests we have available today. If you can find it within yourself to have the fortitude to accept this, that you are undiagnosed but you do have gluten intolerance, and have to eat gluten free forever more, you may well have no further problems. You may well get pregnant, carry your child to term and live a long and happy life.

Now bear in mind this is coming from someone who had no testing whatsoever for anything connected to gluten or allergies; I have done all my own explorations and diagnosis. If you cannot do this, if you are committed to getting that piece of paper that says celiac on it. you may well have a long, and possibly fruitless, journey ahead of you. Again, this is just MHO.

I do wish you luck on your journey into motherhood and am sorry for your past losses :( They are indeed very painful.


Neroli

"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

------------

Caffeine free 1973

Lactose free 1990

(Mis)diagnosed IBS, fibromyalgia '80's and '90's

Diagnosed psoriatic arthritis 2004

Self-diagnosed gluten intolerant, gluten-free Nov. 2007

Soy free March 2008

Nightshade free Feb 2009

Citric acid free June 2009

Potato starch free July 2009

(Totally) corn free Nov. 2009

Legume free March 2010

Now tolerant of lactose

Celiac.com - Celiac Disease Board Moderator

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Thanks for the advice Skylark and mushroom! Well, I do understand I may be destined with possible undected celiac. And I am OK with that, but at the same time, I'd like to at least see what I can do. I am going to my doc in febuary, so I am going to talk to her about this. Last time I was there, she told me if I had one more anemic blood test result she wanted to do further testing out if there was some underlying cause to it. I am also going to see if my if my nails and hair improves. I have noticed my hair is falling out a little less in brushing (I have been off of gluten for a month) I will also see about the genetic testing. If I have to re-gluten for a blood test, I will try by using non-wheat gluten containing foods. Also, in the next few years, the celiac blood test could get revamped to be more accurate, as celiac is gaining in awareness. Getting diagnosed for gluten intolerance/wheat allergy just in itself was a Godsend, as I saw I was not crazy, but really sick!

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My hope is that the rectal or oral challenge studies that detect activated T-cells will be worked into a diagnostic test. That way we won't have to gluten up to learn whether we're celiac.

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I'm non-celiac gluten intolerant too, with positive blood tests and negative biopsy. It caused chronic iron and B12 anemia, hideous GI pain and dysfunction, secondary food intolerances, depression and lots of other problems. I had a lot of blood tests to monitor my iron and B12, and after I went gluten free I saw 3 times that when I was glutened (I felt way worse and my blood antiboides rose) my B12 levels crashed e.g. from 500 to 200 in the space of 2 weeks. I don't know how, but even though I am technically non celiac, exposure to gluten had a direct effect on those levels. Who knows what else it is doing to the body!

I'm now 2 years gluten free and still have to work very hard on my iron in particular. I was scoped again earlier in the year as they suspected crohns due to the chronic anemia, but thankfully they found nothing. As I have worked out other food intolerances my digestion is slowly normalising, and I seem to absorb and keep my nutrients better.

Obviously every one is different, but I am not willing to gluten myself to get further testing, as I accept that my gluten intolerance is as real and significant as celiac, and it's taken 2 years to feel healthy again. I totally understand wanting to tick the boxes for celiac, but the more research I see about it I believe that it's not important to me any more. There's a lot we don't know, both about celiac and gluten intolerance. I hope that your health recovers quickly :)

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Good grief, I did something very naughty. Over the holiday season, my family was given loads of glutened goodies. While I did perfect in avoiding them at first, some petit fours and the chex party mix got the better of me. I was like, "oh geez, its not like I have confirmed celiac, its just a non severe wheat allergy and non-celiac gluten intolerance" While my lips did not swell to the size of 2 sausages, my lips tingled and puffed a bit, and my face itched. But as am I typing this, my intestines are PITCHING A FIT!!! They hurt alot! And I can't stop going the bathroom!And I am so foggy headed, and my joints and muscles hurt. I confirmed that: No matter how tasty it looks, no more gluten, ever! And too: Non-celiac? Yeah, right. But I will still go ahead and say I have non-celiac gluten intolerance. Lastly, there needs to more awareness of non-celiac gluten intolerance, as it is a very really and potentially devastating deal! LIke I said before, I am going to bring this up to my doc in Febuary, and see what she says.

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My "official" diagnosis is gluten intolerant. My scope only went as far as the stomach and my blood work was negative as I wasn't eating any gluten. I had stopped eating except for some rice and bites of chicken. Every time I ate it hurt so bad that it was easier to be hungry & not eat. I will stay with the diagnosis I have than to pursue the official celiac diagnosis as fortunately or unfortunately, depending on how you look at, health insurance companies perk up their ear when "disease" is mentioned and are more likely to deny you. It's enough to know that I feel so much better off of gluten. Some day I would like the gene test but it's not top on my list.

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