Scheduled Endoscopy

[crampy girl]

Hey guys, Its crampy girl again. Well.....I went to see my GI doc at OU MED center. He has been practicing for 25+ years and three years ago when I saw him, he wanted to the the small bowel biopsy but I declined..... Now he wants to biopsy me to see what else may be lurking in there celiac sprue or mastocytosis or eosinophilia, or microscopic colitis. I get to have a scope from both ends. Joy. He talked me into it after I told him all my symptoms. He did not tell me to gluten myself, although I have been gluten free for the most part since August, with much fewer episdoes. But, I know better. 4 servings 4x per day for 4 weeks is what I'm going to do, if I get sick from it, I am going to quit. Especially with Thanksgiving coming up.

Just want to see if anyone has gone through with this with celiac or gluten intolerance.

Also, we had a long conversation about the whole gluten intol vs celiac. He is of the opinion that there is a spectrum and no one know but he suspects gluten intol can eventually lead to full blown celiac sprue.

Wish me luck........

[crampy girl]

Forgot to ask does anyone know if there is a food that is just pure wheat/gluten or the highest level, if I'm going to poison myself I may as well do it right and not add the milk or soy or corn factor, since I am intol. of those.....

[cassP]

Forgot to ask does anyone know if there is a food that is just pure wheat/gluten or the highest level, if I'm going to poison myself I may as well do it right and not add the milk or soy or corn factor, since I am intol. of those.....

i would imagine real squishy bread would be pure gluten... or pizza hut PAN pizza YUMMMMM

good luck with that, gluten challenges can be very uncomfortable...

i only did a 2 week challenge, and insurance would only help with one procedure, i did the colonoscopy just to make sure there was nothing SERIOUS.. glad i did, it was a relief. plus a 2 week challenge may have just given me a false negative on the endo.

looking at your signature- you're positive on fecal antigliadin, which i believe is antibodies we make to attack the gluten which would technically mean nonceliac gluten intolerance (which can be just as bad)... your blood test was negative, but celiacs run about a 20% on false negatives, plus we dont know what your test was- ttg, antigliadin, the newer better Deamiditated antigliadin (i have no idea how to spell that)...

and you have DQ2 which is classic celiac gene...

it's possible you have celiac in addition to gluten intolerance....

idk, did that make any sense? im not a doc

[crampy girl]

Hey cassP, thanks for your reply. The first cloak panel was anti gliadin, ttg,and I think antiendomysial. The second was all the above but done at promethius. No anti deaminated gliadin done. Deep down I hope I don't have celiac sprue and am scared to death, but I need to know because I have not had the motivation to Be 100%, mostly because I haven't done all the research yet, like I didn't know there could be gluten in sausage because of cleaning with bread and cc, and didn't know stuff could be cc, or about lunch meats. I felt belchy for the first time and reflux up my throat for the first time since I went gluten free.

And it actually tasted GROSS!!!! I had cheerios,crackers and a bagel, all were bland tasting and hard to eat, but I can't wait to eat a pizza, that is unless I have an episode, that will be enough to make me stop poisoning my body!

How long were you gluten free before your challenge?

I read somewhere caisen sp? Can do damage too, but I didn't want to overwhelm my system with two poisons, so no dairy for me.

If I test pos for celiac, then I will have to do alot more work to clean up my diet, but if I test neg, I guess I will stay away from most gluten so I don't have the sicknesses of the past.

[jerseyangel]

Forgot to ask does anyone know if there is a food that is just pure wheat/gluten or the highest level, if I'm going to poison myself I may as well do it right and not add the milk or soy or corn factor, since I am intol. of those.....

Good luck with it--we're here if you need us

Oh--Triscuits

[crampy girl]

Good luck with it--we're here if you need us

Oh--Triscuits

Thanks jersey angel! I think I will sit down and cry if it comes back celiac....I'll be back

[ravenwoodglass]

Forgot to ask does anyone know if there is a food that is just pure wheat/gluten or the highest level, if I'm going to poison myself I may as well do it right and not add the milk or soy or corn factor, since I am intol. of those.....

I second Triscuits and also Cream of Wheat. I used both of those for my challenge.

[cassP]

crampy girl: i was very gluten lite for about 8 years before my 2 week challenge & tests... so im not surprised mine were so inconclusive.

even if you were "nonceliac gluten intolerant"- you should know that it still warrants 100% compliance... it's still poison.. antigliadin antibodies have been linked to heart disease.. and gluten has been linked to crohns, ms, lupus, hashimoto's, neurological issues, etc.

tho, i would be even more suspect if i was u- because you have a DQ2... i would suspect that if you have a DQ2 and positive antigliadins... then, why push it- i would theorize that triggering celiac could only be a matter of time

before i even understood my positive on the endomysial antibody- and before i got DH, and before i went back to my GI and he agreed with my self diagnosis-> i actually decided to go 100% gluten free when i got my gene results back- i figured, with my symptoms, and 2 DQ8s- why push it- it would only be a matter of time... a natural progression... but before i did the genetic test- i went on & off gluten for a decade- it's a ROYAL ADDICTION.. so i completely know what you're feeling

[crampy girl]

CassP, I know you are right. I am so freaked out about this diet. I am addicted to gluten,although today it tasted gross to me. Part of me thinks yeah, Ill never be fat, another is scared to death because I am just getting thinner and know I' m pushing vit deficiencies because I keep having recurring corner of mouth cracks,and don't want to be on b vit life long. I think I am going through those grievance stages,and am in the denial phase. Trying to prove that maybe I don't have gluten intol but maybe milk protien is what has had me in havoc... At the same time, what a horrible past year this has been GI wise with more frequent horrific episodes. I can feel my gut rumbling at me now,and hope tomorrow isn't going to be one of those days....thanks for your support and encouragement.

Man do I want cream of wheat! Poison is so addictive...

[crampy girl]

I second Triscuits and also Cream of Wheat. I used both of those for my challenge.

Sounds soooo yummy, reading your story is amazing. Did your kids get better? I am wondering about my 5 yo. She has contipation issues and is very temperamental and moody.how did your kids get diagnosed?

[cassP]

CassP, I know you are right. I am so freaked out about this diet.

its not so hard really... it gets easier for sure... what PISSES me off is that it's not enough, that i (in my case) have to limit my dairy, limit my corn, limit my gluten-free treats, limit my grains... and now im in discomfort & will have "D" tomorrow morning because i overdid my fructose tonight

sorry tmi... sometimes i feel quite superior & fixed.. but other times its like walking a tight rope

have u ever heard of this diet- put out by a veterinarian with celiac:

Open Original Shared Link

(the gard diet... i, personally, dont agree with EVERYTHING on there- but he's got a lot of great insight- and he discusses dairy & it's damaging properties)

[Keela]

I did a 6 month gluten challenge after being gluten free for 2years. None of the food tasted like I remember. I was looking forward to bread and cakes and yeast rolls, but they taste gummy and bland. The bad taste makes it sooo much easier to go back gluten free. Good luck with your challenge!

[crampy girl]

Good luck with it--we're here if you need us

Oh--Triscuits

The fun is starting. Stomach cramping now. It took a while though, makes me think it's more gluten intolerance rather than celiac. Also seems to be dose related, like there is some threshold for it, and the more I eat the worse the symptoms. Does that make sense to anyone?

3 weeks to go!

[GF&lvnit]

WOW reading all this makes me feel less crazy and alone, yet depressed! lol

I am supposed to go for a scope, but am thinking of canceling.

I am positive for the gene, my older sister has been diagnosed Celiac and I have all the symptoms. I went gluten-free and felt like I was given a new lease on life! I went on a cruise and while I tried to be good, must have accidentally poisoned myself and now I seem to be having issues with DAIRY and corn!!!I have been home 8 days and cannot feel normal again, even being strict on my gluten-free diet. I want to cry! I am so frustrated. My husband is against me getting scoped again (I was scoped 7 months ago due to extreme acid reflux, before we realized my gluten issue). My acid reflux (even with my medication) is worse then EVER! I cannot keep my pants buttoned and just want to poke my abdomen with a pin in hopes it will deflate!

Reading your post, I am more frustrated since I asked my Dr WHY scope me if I am gluten-free?? He insisted I should still have "something" for him to biopsy! He never spoke of doing a challenge. If I do bend and do the scope am I supposed to poison myself first???????

Sorry did not mean to make this about me! I am just at my wits end.

[crampy girl]

WOW reading all this makes me feel less crazy and alone, yet depressed! lol

I am supposed to go for a scope, but am thinking of canceling.

I am positive for the gene, my older sister has been diagnosed Celiac and I have all the symptoms. I went gluten-free and felt like I was given a new lease on life! I went on a cruise and while I tried to be good, must have accidentally poisoned myself and now I seem to be having issues with DAIRY and corn!!!I have been home 8 days and cannot feel normal again, even being strict on my gluten-free diet. I want to cry! I am so frustrated. My husband is against me getting scoped again (I was scoped 7 months ago due to extreme acid reflux, before we realized my gluten issue). My acid reflux (even with my medication) is worse then EVER! I cannot keep my pants buttoned and just want to poke my abdomen with a pin in hopes it will deflate!

Reading your post, I am more frustrated since I asked my Dr WHY scope me if I am gluten-free?? He insisted I should still have "something" for him to biopsy! He never spoke of doing a challenge. If I do bend and do the scope am I supposed to poison myself first???????

Sorry did not mean to make this about me! I am just at my wits end.

Hi there, I feel your pain. If I had a sibling w a biopsy or blood test proven celiac, I would not agree to the double scopes. Unless your doc is looking for how much damage there is in order to monitor your response to tx. Or is looking for something other than celiac, as in my case. If you are symptomatic on gluten, better off it, this forum overwhelmingly leans strongly on the presumed celiac diagnoses. Or if you have a pos blood test, why do the scope, unless you are malnourished, have vit def. And obvious fat malabsorption issues.

Then I would advise getting scoped to see how much damage there is, stay strict and re biopsy in a year. It seems like for some reason celiacs have casein problems, corn prob/ intolerances. I'm not sure if that equates to the infamous enterolab IgA allergy to those things, but my test came back w soy and casein and gliadin igA elevation, and when I cut all thoses out, my gerd and cramps go away,but it seems to be related to a certain threshold. I am agreeing to the scopes partly because this diet is so restrictive that if I don't have villi damage, I am thinking of gluten/ casein/soy light but not complete cut out. Not sure that will be the right decision.........also I wonder if I am not having the full blown symptoms of diarrhea/ nausea/cramps with gluten light, I wonder if I am consuming enough for the tests to come back w conclusive results.... As you see, I am also confused and feel crazy. B)

[crampy girl]

Hi there, I feel your pain. If I had a sibling w a biopsy or blood test proven celiac, I would not agree to the double scopes. Unless your doc is looking for how much damage there is in order to monitor your response to tx. Or is looking for something other than celiac, as in my case. If you are symptomatic on gluten, better off it, this forum overwhelmingly leans strongly on the presumed celiac diagnoses. Or if you have a pos blood test, why do the scope, unless you are malnourished, have vit def. And obvious fat malabsorption issues.

Then I would advise getting scoped to see how much damage there is, stay strict and re biopsy in a year. It seems like for some reason celiacs have casein problems, corn prob/ intolerances. I'm not sure if that equates to the infamous enterolab IgA allergy to those things, but my test came back w soy and casein and gliadin igA elevation, and when I cut all thoses out, my gerd and cramps go away,but it seems to be related to a certain threshold. I am agreeing to the scopes partly because this diet is so restrictive that if I don't have villi damage, I am thinking of gluten/ casein/soy light but not complete cut out. Not sure that will be the right decision.........also I wonder if I am not having the full blown symptoms of diarrhea/ nausea/cramps with gluten light, I wonder if I am consuming enough for the tests to come back w conclusive results.... As you see, I am also confused and feel crazy.

[GF&lvnit]

I so appreciate your input!

I believe the scope is simply because HE wants to be more "convinced" that it IS Celiac. From all I have learned the scope most likely won't even come back positive. He actually said at the end of the apt after stating he is "not convinced" that some patients can read symptoms and convince themselves they have them. I almost lunged at him!!! I was not there to "convince" him of anything I was answering all his questions and I happen to have a billion symptoms since the age of TWO. I felt so angry when he said that. It is MY body and my symptoms. For him to imply I may be just creating symptoms in my head after ALL the crap I have been going through. THEN to tell me in order to make HIM feel more convinced he wants to scope me even though I am gluten-free! ARGH!!!!!

I think I will take your advice and cancel the scope. I do not believe he is searching for anything other then Celiac. I did consider having it done just so that if he finds nothing maybe he will dig deeper and LISTEN! I already contacted my referring Dr. to let her know of my frustration and see if there was another direction I can go.

I am going to eliminate dairy for awhile since I seem to have damaged myself on my cruise and now dairy is making me bloat so bad my skin feels like it is being stretched. I just want to cry!

Thanks again for your help and good luck!!

[crampy girl]

I so appreciate your input!

You are more than welcome. I started another topic under non diagnosed to get more feedback, I think I am going to resolve to go back to gluten free casein free no matter what my test shows.....although deep down I want an answer. Its terrible having the issues, and terrible going on this diet, I felt like I was spiraling down a path of malnourishment and weight loss with the gluten and casein free diet. But, the lesser of the two evils is gluten free for sure. Lots of people on this forum seem to have gotten the hang of it and don't seem to be dying of malnourishment. Rather they are rejoicing to have their health back. I keep on getting these corner of my mouth cracks from vit def. so I have a lot to learn about gluten free, casein free. I hope your symtoms resolve on dairy free. Maybe also try probiotics? Also make sure you didn't get some GI bug/parasite. If you don't improve in 1 mo or so, see a GI doc. And... I would change GI docs if I was you. Sounds a bit unprofessional to me. I am lucky that I am an MD and trained with my GI, so he knows I am not fabricating anything. I hate when docs assume or allude to that. It is so embarrassing for us to even go see anyone about all these crazy symptoms and to put our trust in them. You deserve better than that. Good luck.

[GF&lvnit]

Thanks AGAIN I know where you are with yours. I WANT some sort of diagnoses. I have a son and need to know if I HAVE Celiac and am not just carrying the gene! I am already working on a new Dr.

You really made me think...."bug"...hmmm I WAS just in Jamaica, Mexico etc. I am feeling worse every day. Last night I was beside myself in tears. My stomach gets so distended in the evenings that I feel like I am going to get stretch marks. I want to crawl out of my skin. Today I woke crampy and bloated and my fatigue seems to be back (that was the WORST of my symptoms before gluten-free, that and hair loss). I am either chilled of clammy hot in the evenings. I just want my body back. I went from feeling AMAZING with a flat stomach and loving the feel of my own body to wanting to gut myself. Is it possible to have GI bug hit HARD after a week of being back? How would they test for that? I had bloating issues since the ship (figured it was the gluten I got).

I am taking probiotics (stopped when I went on the cruise, wanted to keep them refrigerated and travel made it a pain).

On the note of gluten-free being hard. I understand and I feel I was lucky. I had gone low carb (went off South Beach book) as a life style change in Feb this year. I cut all processed food, bread and pasta(I WAS A TOTAL bread-aholic - I own my own restaurant and ate my home made bread EVERY MORNING). I thought I would be tortured but when the weight started to melt off (25#) with me still eating all the time (just not carbs) I was great with it! SO, when I had to go gluten-free it was not such a slap in the face as I still do not eat those things. The hard part for me was introducing things like pasta (rice) again since I had a fear I would balloon up lol! I also have vegan/vegetarian items on my menu so I made sure some were gluten-free and now offer that too. Should you ever want a recipe let me know. I make a great Quinoa and black bean mix. VERY yummy! If you look at my site and see an item you want to make I can tell you how www.sugarbearpawpaw.com

How is your challenge going? I feel so miserable i could not imagine putting Gluten in my diet. I appreciate your support, you have helped more then you know.