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To Scope, Or Not To Scope?

glutenfreemamax2

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glutenfreemamax2 Enthusiast
glutenfreemamax2
Posted

My labs are "negitive" I have my follow up next Thursday with my PCP. He told me when he ordered the labs that he was going to send me to the GI. I went to my son's GI this morning with him, and the appointment turned into my gluten intolerance(son is cleared, fine, and thriving!) She said that they are probably going to want to do a scope. Why am i so freaked by this? I'm petrified, and have so much anxiety about it, it's unreal. Do they HAVE to do the scope, or can I just do the gluten challenge and go that route? I guess i'm not understanding all the different testings. My labs were negitive like I said. I think i have been glutened lately, because my stomach is singing a different tune (there is a LOT of cc in my house) I'm so scared of the scope. Any sugestions or help would be much appreciated!

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vegan lisa Rookie
vegan lisa
Posted

If you are afraid of the scope, it's really not so terrible. The "conscious sedation" they use really will make you so relaxed that you won't care a bit about the scope. Most people don't remember the scope at all, and the nurse told me at mine that many people don't remember being at the hospital at all.

One advantage of the scope is that they can look around and see if something else is going on. They can see other problems that might seem like celiac/gluten intolerance and will then find the correct treatment for you. Or you could get a definitive diagnosis of celiac, which has a specific treatment too! All good news, in my opinion.

One disadvantage is that you could be like me, and get a negative biopsy (and no other issues found) and be left on your own. I'm trying the gluten-free diet, but it's hard to get compliance from family when they think it's "just intolerance, so we don't need to go overboard here...". I don't feel like my situation is ideal, but I don't regret doing the scope at all.

Good luck.

Lisa

cassP Contributor
cassP
Posted

dont be afraid- it should be a breeze. my colonoscopy was EASY (the prep & gas pain after sucked- but you dont get those with the Endo)

anyways- if you're not eating enough gluten tho- the endo could be a complete waste of your time and money-

also the doctor should take 6 biopsies from different areas of the S.I... if he doesnt- that would also be a complete waste... something to think about

glutenfreemamax2 Enthusiast
glutenfreemamax2
Posted
  • Author

dont be afraid- it should be a breeze. my colonoscopy was EASY (the prep & gas pain after sucked- but you dont get those with the Endo)

anyways- if you're not eating enough gluten tho- the endo could be a complete waste of your time and money-

also the doctor should take 6 biopsies from different areas of the S.I... if he doesnt- that would also be a complete waste... something to think about

I'm not eating any gluten. I got some I think on Sunday, and I've had a rash, bloating, c (able to go today, but only a little) increased mucus production, foggy brain, and some joint pain. If that is only a little,or cc, I would HATE to see what would happen to me if I ate gluten like I used to. I know that the scope is not accurate if I don't eat gluten. I really don't want to eat it because of how bad it makes me feel.

We don't have any Celiac Dr's in my area, or Dr's who know much. I fell like I'm banging my head agenst the wall. I'm so afraid of being dismissed as a hypochondriac, and them not taking me seriously. Uggghh. Talk about frustrating. I just want them to recognize that it's something, and not nothing. Just please tell me i'm not crazy, and make my husband understand. When we left today, he said "So if it's just an intolerence, then you don't have to worry about cc and things like that right?:" I can't help but get mad at him.

cassP Contributor
cassP
Posted

you're NOT crazy... and i understand that feeling and wanting to be validated.

if you feel comfortable posting your blood results up here- we could make more sense out of them maybe.. if u look at my results below in my signature- you can see how they look "negative"... but im a positive.

the biggest thing to know is that you're response to the diet is the biggest indicator. and even if you didnt have Celiac- Celiac is ONLY the Autoimmune response in the Small Intestine, and often also in the Skin.... HOWEVER... gluten & Wheat Germ Agglutin can cause ALL KINDS of damage & inflammation thruout the body- it has been linked to Crohns, Ulcers, Barret's Esophagus, Cancers, and Neurological Disorders.... so please understand that "JUST GLUTEN INTOLERANCE" can be just as big a deal as an official Celiac Dx. and even a little cc can be a big deal too.

cyberprof Enthusiast
cyberprof
Posted

My labs are "negitive" I have my follow up next Thursday with my PCP. He told me when he ordered the labs that he was going to send me to the GI. I went to my son's GI this morning with him, and the appointment turned into my gluten intolerance(son is cleared, fine, and thriving!) She said that they are probably going to want to do a scope. Why am i so freaked by this? I'm petrified, and have so much anxiety about it, it's unreal. Do they HAVE to do the scope, or can I just do the gluten challenge and go that route? I guess i'm not understanding all the different testings. My labs were negitive like I said. I think i have been glutened lately, because my stomach is singing a different tune (there is a LOT of cc in my house) I'm so scared of the scope. Any sugestions or help would be much appreciated!

The scope would be useless for you...you've been gluten free. Unless you want to do a gluten challenge - 2 or 3 months with multiple servings of wheat/gluten daily and then do the scope.

You could have gene testing or try enterolab. Or try a gluten challenge and use those results to prove to your doc and your family that gluten makes you sick.

glutenfreemamax2 Enthusiast
glutenfreemamax2
Posted
  • Author

The scope would be useless for you...you've been gluten free. Unless you want to do a gluten challenge - 2 or 3 months with multiple servings of wheat/gluten daily and then do the scope.

You could have gene testing or try enterolab. Or try a gluten challenge and use those results to prove to your doc and your family that gluten makes you sick.

CC is a big thing in my house, because my husband cooks most nights. He thinks i'm just OCD about it, and taking it way past extream. This past weekend, I had made 2 different mac and cheeses. One for the kids and him, and one for me. He took the serving spoon out of theirs, and rested it in my pot. He's like oh that little bit shouldn't hurt you. It's only a little. Well today, I'm feeling it. I can't 100% blame it on him, but I don't know what else to do to make him realize that this is harmful to my system. We have our first joint counseling session tomorrow.

Is there a way that I can wash a few pots and spoons to uncontaminate them? I will make my own area if necessary and tell him not to cook for me. That's really mean sounding, but I don't know how to say it nicely :(

Any books that I can read, or information out there I can print to make him more aware of the gluten intolerance? He thinks, like i said, that I'm just being OCD about it. :eyeroll:

I'm kind of looking forward to what the GI says. Uggghhh

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Dixiebell Contributor
Dixiebell
Posted

Hopefully he will become more understanding with time.

My husband and I had a few heated arguements over the gluten issue. He is actually not criticing the way I want things done now. It took several months for him to come around. Our son is a scout and I think my husband being around other children with other allergies etc. has shown him that our son isn't odd because he is gluten-free. He has also met other people who are gluten-free.

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