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Eddiethecat

Definitely Ncgs But Am Beginning To Suspect Celiac

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Hi,

I'm new to the forum and and so glad to be able to chat with others with the similar experiences!

 

A little background.  When I was a kid, I was always sick (flu, colds etc) and really skinny until I had my tonsils out in kindergarten.  After that as I like to say, I got real healthy (translation big appetite and weight gain). When I was in grade school I remember complaining my stomach hurt, my mom took me to the dr and was told it was gas. She thought I was trying to get out of school but I just remember my stomach hurt!.  as I got older I remember that after I would eat my intestines would vibrate and gurgle and make embarassing noises.... I would get constipated most of the time.  This went on into adulthood, and I noticed I would feel ocassional nausea and almost daily reflux ( didn't know what it was at the time)  When I was pregnant with my daughter it was the only time I didn't have annoying stomach issues, and it didn't seem to start back up until about 2 years after she was born.(that was in 2000).  For the past decade I started to notice little things, like near constant anxiety, so I would look into things like too much estrogen, candida and so on.  Then starting about 4 years ago  I started to notice joint pain.  It started in my left shoulder - this dull aching that wouldn't go away.  I scheduled a dr appt and of course the day of the appt it magically went away. Then by 2012 the joint pain progressed into my knees and ankles to the point where if I had been sitting at my desk at work for a period of time and had to get up to go to a meeting, I could barely walk.  Sometimes my legs would just ache at night.  I also developed plantar facitis.  At this point the anxiety was non-stop, and I would have days where I felt out of it.  No matter how much sleep I got at night I always felt tired or had low energy.  Sometimes I would be talking to someone and I would draw a total blank on what word I was trying to say.  It was embarrassing!!  I also was experiencing incredibly bad gas and bloating every evening.  I knew something wasn't right I just had no idea how to express it where a Dr woudln't think I was nuts!  I started looking at things like arthritis (I was in my late 40s at this point).  I remembered I had looked at gluten a few years before but didn't really grasp the concept of gluten free (this was pre-fad days) .  I decided to look at it again and was shocked at how many of the symptoms I had that related to gluten intoloerance.  So in Sept of 2013 I decided to try gluten free for a couple of weeks to see if it would make a difference.  I really wasn't expecting any change.  Boy was I wrong!  Within a few days it was like day and night.  The constant anxiety was gone.  My joints stopped hurting, I started to feel like I could think clearer. After a few months I started to notice things I didn't even connect to gluten.  My face cleared up (I always seemed to have pimples pop up)  my plantar facitis went away.  The little bumps on the back of my arms that had always been there (chicken skin) started to go away.  At that point I knew I had a sensitivity and was determined to remain gluten-free for life. 

 

There was a part of me that still thought maybe I was imagining it, and the possiblilty of celiac disease had never entered my mind.  Then one evening I had a couple the "gluten removed" beers (don't want to say the brand) that night I slept fine, yet the next day I was completely exhausted. and I noticed the platar facitis in my right foot started to flare up.  That night at dinner my family said I looked like I had eaten gluten, and I felt like I had, but I was adament that I hadn't.  The next day I couldn't even put pressure on my right foot.  I knew I had been glutened but couldn't figure out where, as I thought I had been very careful. Then I read about that beer, and that many people had also had bad experiences with it.  This confirmed for me that gluten intolerance wasn't all in my head!  I decided to have the stool test done from Eterolabs.  My Fecal Anti-gliadin IgA 73 Units.

 

I am a part time food photographer and at the end of June I was working on some photos for a client that sells various mixes for southern fried food and desserts.  I have no idea what got into me, but as the chef was preparing the different items I decided to sample things.....The next day, I didn't notice any big reactions so I thought I skirted by with not getting enough ppm of gluten to affect me.  That evening after dinner I became ill.  This went on for most of the evening.  After that stopped, I noticed my tongue was really irritated, like I had burned it on hot liquid.  So I looked it up and discovered I have geographic tongue.  I also saw that it could be a sign of celiac disease.  Up until this point I had never thought of the possiblity of celiac disease.  But now I was starting to put the pieces together.  My father has a lot of digestive issues, including colitis and diverticulitis. Since I've been gluten free I can't really get any celiac tests done so I decided to get the genetic test done, since if there is no gene then I have nothing to worry about other than the inconvience of getting glutened.  But if I have the gene, then I know there is a risk that it has developed or could develop.  I went back to Eterolab and this is the results of my gene test:

 

Gluten Sensitivity Gene Test

HLA-DQB1 Molecular analysis, Allele 1      0302   

HLA-DQB1 Molecular analysis, Allele 2      0301   

Serologic equivalent: HLA-DQ   3,3  (Subtype 8,7)

 

Interpretation of HLA-DQ Testing:  HLA-DQB1 gene analysis reveals that you have one of the genes that predisposes to gluten sensitivity and celiac disease, in your case HLA-DQB1*0302. Each of your offspring has a 50% chance of receiving this gene from you, and at least one of your parents passed it to you. You also have a non-celiac gene predisposing to gluten sensitivity, in your case HLA-DQB1*0301. Having one celiac gene and one gluten sensitive gene means that each of your parents and all of your children (if you have them) will possess at least one copy of a gluten sensitive gene. Having two copies also means there is an even stronger predisposition to gluten sensitivity than having one gene, and the resultant immunologic gluten sensitivity or celiac disease may be more severe.

 

So now I am thinking that I have celiac, based on all the 'circumstantial' evidence I have gathered. My theory is I've had gluten sensitivity and it began to turn into celiac in the last few years. I did go see my primary care dr to discuss this, but I think he is not up on the latest info about celiac - He still thinks its really rare and that he only has 2 patients with it and both have DH. (meaning you HAVE to have DH).  I did schedule a phsyical to at least rule out anything else like thyroid, however having been gluten-free almost a year I blood tests and endoscopies will probably come up negative with regard to celiac. So there I am, without a real diagnosis.  I am living as though I do have it though to be safe. 

 

Sorry this is so long, I just wanted to share and see if there is anyone else in this limbo state of not having a diagnosis and not wanting to consume gluten just to get one.

 

 

 

 

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Absolutely! That is where I'm at as well. In my case, it's an absolute "can't consume gluten" for a diagnosis, as I had serious neurological complications from the gluten challenge that I attempted.

 

I'm going to wait until science advances and comes up with a testing method that doesn't involve gluten eating. Either that or not bother at all.

 

At the end of the day, if I have celiac, I'm treating it. If I have NCGS, I'm treating it. Most of my family and friends don't really care what my DX is, they just know that I won't touch gluten with a 10 foot pole. The hospital doesn't ask for proof of celiac before eating off their gluten free menu and I never plan on getting into prison to test how good their gluten free cooking is there. LOL!

 

If you are fully convinced in your own mind of what you need to do, that's half the battle right there. 

 

Welcome to the forum! :)

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Absolutely! That is where I'm at as well. In my case, it's an absolute "can't consume gluten" for a diagnosis, as I had serious neurological complications from the gluten challenge that I attempted.

 

I'm going to wait until science advances and comes up with a testing method that doesn't involve gluten eating. Either that or not bother at all.

 

At the end of the day, if I have celiac, I'm treating it. If I have NCGS, I'm treating it. Most of my family and friends don't really care what my DX is, they just know that I won't touch gluten with a 10 foot pole. The hospital doesn't ask for proof of celiac before eating off their gluten free menu and I never plan on getting into prison to test how good their gluten free cooking is there. LOL!

 

If you are fully convinced in your own mind of what you need to do, that's half the battle right there. 

 

Welcome to the forum! :)

 

 

Thanks!

I agree, I wish there was another way to test.

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