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Am I Really A Celiac?


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I constantly want to test to see if I will react. I usually have a reaction when we go out to eat. When I have been glutened it usually lasts about 2 weeks. When I mention that I want to eat something that's not legal all of my family yell NO! They like me better than the evil twin that comes out with gluten. It just doesn't click in my brain. Whenever I feel good for a while I think maybe its not celiac. My family and I know it but I just can't grasp it.

I think one of my problems is that over the years I have had bloodwork 3 times and they were all negative. One test came back high IGA 393 ref range (69.3-309.0). My biopsy came back positive. I have the HLA-DQ8 gene. My GI calls it Latent Celiac. Pill camera was normal. He also calls my Crohns Latent Crohns. I have all the issues but their ?Latent?

Anyone else in unbelief and want to keep testing it?

God bless

Vicky


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ShayFL Enthusiast

Vicky...you had a POS biopsy....the gold standard for Celiac AND you have a Celiac gene. You are Celiac, whether you believe so or not. It isnt latent. And I assume some sort of symptoms got you to the GI doctor. You say you are improved. Do you want those symptoms to come back? Are a return of symptoms not enough to convince you? Will you be one of those people who starts eating gluten again and doesnt get convinced until you develop other auto-immune diseases like diabetes, MS, RA....or perhaps Celiac related lymphoma would convince you? It is a very hard to treat cancer in Celiacs.

Not sure what it would take to convince you......only you can decide that.

IMWalt Contributor
I constantly want to test to see if I will react.

Anyone else in unbelief and want to keep testing it?

God bless

Vicky

Yep. Just last night I drank a regular beer. A little bit later I had some gurgling and gas, and then this AM a little D. My wife yells at me (I didn't tell her about last night), but I keep hoping maybe it's coincidence that when I eat something with gluten in it I have D the next morning and gas all night. So now I am up to 6 times trying in the last 4 months, and gas 5 and D all six. It's frustrating to me mainly because of the severity of the reaction. Some times my insides will churn for a week after from a tiny little amount, and another time I eat more, and just have a little D. Sooner or later I will just give up trying to figure it all out.

Walt

JNBunnie1 Community Regular
Yep. Just last night I drank a regular beer. A little bit later I had some gurgling and gas, and then this AM a little D. My wife yells at me (I didn't tell her about last night), but I keep hoping maybe it's coincidence that when I eat something with gluten in it I have D the next morning and gas all night. So now I am up to 6 times trying in the last 4 months, and gas 5 and D all six. It's frustrating to me mainly because of the severity of the reaction. Some times my insides will churn for a week after from a tiny little amount, and another time I eat more, and just have a little D. Sooner or later I will just give up trying to figure it all out.

Walt

See, this is totally not a problem for me. My father died of leukemia at 53, and I get sick for a full month (miserably, can't work for part of the time sick) off even the tiniest bit of gluten. Those two things are plenty to keep me from even doubting, or being tempted to cheat.

oceangirl Collaborator

severe symptoms- me, too!

lisa

jamrock Rookie
Vicky...you had a POS biopsy....the gold standard for Celiac AND you have a Celiac gene. You are Celiac, whether you believe so or not. It isnt latent. And I assume some sort of symptoms got you to the GI doctor. You say you are improved. Do you want those symptoms to come back? Are a return of symptoms not enough to convince you? Will you be one of those people who starts eating gluten again and doesnt get convinced until you develop other auto-immune diseases like diabetes, MS, RA....or perhaps Celiac related lymphoma would convince you? It is a very hard to treat cancer in Celiacs.

Not sure what it would take to convince you......only you can decide that.

Believe you stay much healthier without that food, I felt that way in the initial months of avoiding gluten everynow and again I would cheat a little get sick and then I finally gave up and avoided gluten as best as I could, it is a life changer but like everything else in life one learns how to adjust

Blessings Explorer

I just had a couple of days of depression. They were enough to make me forget about cheating again. thanks for all the encouragement. I will be good! I will be good! I will be good! I WILL! I WILL! At least I will keep telling myself I will be good. :D

God bless,

Vikcy


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pele Rookie

Yikes!! The only reason I can think that any celiac would purposely eat gluten is lack of understanding of what gluten does to your body. Please read Dr. Peter Green's book Celiac Disease: A Hidden Epidemic or watch this video from UCSD on youtube:

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    • Jsingh
      Hi,  My 7 year daughter has complained of this in the past, which I thought were part of her glutening symptom, but more recently I have come to figure out it's part of her histamine overload symptom. This one symptom was part of her broader profile, which included irritability, extreme hunger, confusion, post-nasal drip. You might want to look up "histamine intolerance". I wish I had known of this at the time of her diagnosis, life would have been much easier.  I hope you are able to figure out. 
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      My 5yo was diagnosed with celiac last year by being tested after his sister was diagnosed. We are very strict on the gluten-free diet, but unsure what his reactions are as he was diagnosed without many symptoms other than low ferritin.  He had a school party where his teacher made gluten-free gingerbread men. I almost said no because she made it in her kitchen but I thought it would be ok.  Next day and for a few after his behavior is awful. Hitting, rude, disrespectful. Mainly he kept saying his legs were shaking. Is this a gluten exposure symptom that anyone else gets? Also the bad behavior? 
    • 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?
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