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I Must Be Crazy, Or Am I?

penguin

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penguin Community Regular
penguin
Posted

I was out of town this weekend fot a wedding and had a gluten binge. Seriously, all gluten, all weekend long. Other than my head floating on the ceiling, I'm fine. I did take a lot of pre-emptive immodium, though. I'm not delusional. I do not think that I'm cured. I do not think that anybody anywhere cured me. I'm still eating wheat.

I've decided that I'm not comfortable with the way I was diagnosed. It's just that, if I'm going to have this on my record forever, and if I'm going to have trouble getting health insurance, and if I have to put up with this PitA lifestyle, I want at least two doctors to tell me I have it. I don't want to be 20 years down the line and find out I was misdiagnosed. I've decided I want a biopsy, and that I had better do it before all of the damage, if there is any, goes away totally. I also want the blood tests redone, while I'm purposefully eating a lot of gluten. I was pretty low gluten, without knowing it, before my blood test.

And my mom has been harassing me about getting a colonoscopy for a couple of years, since I've had chronic D for 3 years. Fair enough. I need to rule out Chron's disease and colitis before making this lifetime gluten-free commitment.

Questions: I have to be eating a lot of gluten for what? 3 months before a biopsy? How much gluten daily? How long do I need to be on gluten to redo a blood test? My office appointment with the new GI is on the 15th of June. He supposedly treats most of the Celiacs here. I don't want to deal with enterolab since it's cost prohibitive.

Thoughts?

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CarlaB Enthusiast
CarlaB
Posted

Enterolab ended up being less expensive for me than the copayments for the endoscopy and colonoscopy. I completely understand wanting a firm diagnosis; I wish I had one! I did get a firm diagnosis of gluten intolernace from Enterolab ...

I was on gluten for six weeks, eating some every day. I was very sick; by the end I was not even comfortable driving. I had not been gluten free before the six week gluten challenge, but had not eaten a significant amount of wheat for 3 years because it gave me an upset stomach. I wish I had known all I have learned here before my biopsy and blood tests because they may have had different results. I do not know how many biopsies they took or what lab they went to. So, I don't really trust the results. By the time I went to Enterolab, I had been gluten-free for almost three months and I was barely within the limits of absorbing my food. I still eat twice as much as a normal person my size (just the other day I ordered a second meal when we were out to eat and the waitress looked at me like I was from another planet!). So, there had to be some damage there that just wasn't found by the lab. Or maybe the doc just missed the damage when he biopsied; I'll never know.

You might be crazy, but I understand wanting the diagonosis. Remember, though, that you still may not get one. You are the one who has to decide whether it's worth it. Just be sure you don't make the mistakes I did!!

mouse Enthusiast
mouse
Posted

I can't remember if it is 3 months or 6 months. But, you have to be ingesting gluten to the equivalent of three slices of bread a day for that time frame. The endoscope (sp) can be hit or miss, depending on where the samples are taken and how many are done. They say that you cannot have a false positive for Celiac, but that you can have a false negative. Good luck in your search.

plantime Contributor
plantime
Posted

If you need the second opinion for your own self, then eat the gluten and see the doctor. I think it was that you had to eat two slices of bread every day (or the equivalent) for 6 weeks to three months, depending on how much damage you still had. You are not crazy, you are just wanting to double-check your results.

CarlaB Enthusiast
CarlaB
Posted

I definately did not eat three slices of bread every day, that may have been part of my problem! Some days I did, but after a while, I was so sick, I could barely eat a bite of it some days. Clearly there was a problem! One evening I ate some wheat thins, the next day I couldn't get out of bed till noon; it was like I had a hangover. My husband tried to get me to stop the gluten challenge many, many times. With hindsight, I can see I should have since it was clearly making me so sick I couldn't perform any of my normal tasks.

Chelse, please have a Big Mac for me and tell me how gross it really is :P We live on the same block as a donut shop, so my kids have their Saturday morning routine of walking over for some donuts (the kids who aren't gluten-free), then bringing them home to eat. They sit there and tell me they're disgusting. Clever kids! :rolleyes: Fortunately, I do not have a sweet tooth, it's Big Macs that I miss!

penguin Community Regular
penguin
Posted
  • Author
Chelse, please have a Big Mac for me and tell me how gross it really is :P We live on the same block as a donut shop, so my kids have their Saturday morning routine of walking over for some donuts (the kids who aren't gluten-free), then bringing them home to eat. They sit there and tell me they're disgusting. Clever kids! :rolleyes: Fortunately, I do not have a sweet tooth, it's Big Macs that I miss!

I actually had a big mac for dinner on the way home from Arkansas last night! It was ok, I could only eat half of it. It doesn't live up to the hype :P

I had a McGriddle for b-fast today, now those I missed! Still ickier than I remember though...

My sweet tooth has mostly gone away, I'm all about salty! DH and I have eaten almost an entire loaf of Panera asiago cheese bread in the last day :o

No wonder I'm on the ceiling :rolleyes:

wolfie Enthusiast
wolfie
Posted

Have some Krispy Kremes for me!!!

Anyway, I asked my gastro how much gluten and for what period of time I would have to eat it for a challenge and she said 4 pieces of bread (or the equivalent) for at least 4 weeks, if not longer. She was tellling me this when I had been gluten-free for 3 weeks and low gluten (South Beach/low carb) for 8 months before that. I got sick eating 1 Triscuit, though, so I won't be doing that anytime soon. My kids Ped had wanted me to have an "official" diagnois confirmed by biopsy before he would test my kids, so that is why I considered the challenge. I told him about the Triscuit experience and he has now tested my son and we are awaiting the results.

Let us know how your challenge goes!

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DingoGirl Enthusiast
DingoGirl
Posted
I actually had a big mac for dinner on the way home from Arkansas last night! It was ok, I could only eat half of it. It doesn't live up to the hype :P

I had a McGriddle for b-fast today, now those I missed! Still ickier than I remember though...

My sweet tooth has mostly gone away, I'm all about salty! DH and I have eaten almost an entire loaf of Panera asiago cheese bread in the last day :o

No wonder I'm on the ceiling :rolleyes:

I am so jealous... :( If I have even a smattering of gluten (and I am most definitely Celiac with not ONE villi and outrageous TGa and whatever other levels those are) I am extremely sick. Craved gluten-y junk all weekend.....would love a McGriddle, have never had one, never wanted one pre-dx....why do they look so good now?? :huh:

tarnalberry Community Regular
tarnalberry
Posted

If you need to do it, you need to do it. Good luck! I've heard the equivalent of three slices of bread a day for three months.

penguin Community Regular
penguin
Posted
  • Author
If you need to do it, you need to do it. Good luck! I've heard the equivalent of three slices of bread a day for three months.

I see many triscuits in my future :P

I'm going to carb overload for as long as I can...although I'm still only going to have pre-packaged gluten, I'm not contaminating my kitchen again. I'm still going to eat Tinkyada, since it tastes better anyway :)

jerseyangel Proficient
jerseyangel
Posted

Chelsea--I think you have a valid point. If you are not comfortable about this, then you should definately go for the re-testing. For the record, I have also heard the 3 slices of bread a day for 3 months. This is just my opinion, but since you've been so completely gluten-free for several months now, I would try to go even a bit longer than that, if you can. Maybe 6 months. I also had a colonoscopy the same day as my endo. It's a good idea--they can take a sample to biopsy for microscopic colitis, as well as check for Chron's. I hope you continue to feel ok with the gluten eating--and if you happen to eat any good, crusty Italian bread with real butter on it (think Columbus Bakery ;) )--do it for me :D

Guest nini
Guest nini
Posted

go to one of those pizza places that uses HIGH GLUTEN flour for their pizzas! LOL! (that's what they use at the pizza place my hubby works at.

I can understand wanting a firm dx and you do what you have to do, but please consider you could have other food intolerances or non celiac gluten intolerance as well. Was the diet helping you AT ALL? Did you eliminate dairy?

I ask cos I care. When I first tried the gluten-free diet without a dx, I didn't do it 100% and then I let my OB/GYN talk me out of it, he told me it was bad for my baby! (I was 3 months pg at the time)... it took until my daughter was 3 and me almost dying several times before I was finally accurately dx'ed. My bloodwork was very very high and my response to the diet has been more than conclusive.

mamaw Community Regular
mamaw
Posted

good luck

mamaw

penguin Community Regular
penguin
Posted
  • Author
go to one of those pizza places that uses HIGH GLUTEN flour for their pizzas! LOL! (that's what they use at the pizza place my hubby works at.

I can understand wanting a firm dx and you do what you have to do, but please consider you could have other food intolerances or non celiac gluten intolerance as well. Was the diet helping you AT ALL? Did you eliminate dairy?

The funny thing is I don't even want pizza! I think I've grown to like the chebe stuff better! :)

The diet did help, some. I found that I could tolerate cultured dairy like yogurt and cheese, probably because the bacteria eats up the lactose in the culturing process. I was only gluten-free 4 mos and had the occasional normal bm, which DH pointed out is fantastic after 3 years of NEVER having one. My hypoglycemia improved, brain fog went away, etc. I'm not denying a problem with gluten. I just want to know if it's a non-celiac gluten intolerance, or actual celiac.

I have a few reasons for this:

1: insurance reasons, HMO's don't give a flip about intolerances, but they get concerned about celiac

2: I want to know if I'll pass it on to my kids

3: I want to know if I'm killing myself every time I get glutened 4: There are other things that can cause an elevated IgG, and I want to rule those out.

I know you care, Nini :) I appreciate that

I'm lucky that I have a dr that diagnosed with dietary response and inconclusive bloodwork, but it also unnerved me when she said celiac was a "faddy" diagnosis. Never hurts to get a second opinion, I just wish I would have done it before going gluten-free!!!

jerseyangel Proficient
jerseyangel
Posted

I have to ask--did eating this gluten food cause you any discomfort at the beginning? I've been wondering lately how I'd react to an actual serving of gluten, as opposed to the CC that normally causes the reaction for me. Like, when you ate the first thing this weekend, did you get sick at first, or not at all? Just nosy! :ph34r:

penguin Community Regular
penguin
Posted
  • Author
I have to ask--did eating this gluten food cause you any discomfort at the beginning? I've been wondering lately how I'd react to an actual serving of gluten, as opposed to the CC that normally causes the reaction for me. Like, when you ate the first thing this weekend, did you get sick at first, or not at all? Just nosy! :ph34r:

You know, it's funny, because if I'm cc'ed it sucks. The first thing I ate was a cherry turnover. The second I swallowed my stomach started making a lot of noise (like I angered the beast :lol: ) and that was it. I felt slightly stoned, but not much. I kept myself VERY well medicated with bentyl and pre-emptive immodium so I didn't let myself get sick! I was in a wedding and had to run around with the bride for 2 days, so I couldn't afford to be sick. It was wierd! I get more sick from cc, it seems. Maybe I just let myself get less careful or something prior to my little challenge. Maybe it's all in my head, who knows?

So I don't know what's going on. I'm majorly foggy today, but I even had a normal bm today after 4 days of full on gluten!!! It was the right color and everything, instead of the typical strained squash. It might have been from the immodium overload of the last few days. I think the locals are getting angry though, cause my lower half is feeling a bit wierd now, and I stopped medicating.

CarlaB Enthusiast
CarlaB
Posted

When I went on my gluten challenge, I, too, did not have a lot of intestinal symptoms. In fact, I was so bloated, I gained weight. It almost seemed like my body was too overloaded to take care of it and just stored it to eliminate later, whereas when I get cc, it's like my body says "I'm getting rid of this as fast as possible."

Ursa Major Collaborator
Ursa Major
Posted

When I did a gluten challenge last month, before my dermatologist appointment, I didn't get diarrhea for a week! Last year things would go through me within 30 minutes (at best) after eating gluten. But now the reaction is very delayed.....at least the diarrhea is. I think that as your intestine heals, for some people the reaction will be quite delayed, making it harder to figure out what caused the problem.

So, with you taking all the meds as you were eating gluten, and having been gluten-free for three months prior to the wedding, you might not start feeling very ill for another week or more. Who knows.

I read that for some people the tests won't be accurate unless they eat gluten for more than a year after being gluten-free for a while. What are you going to do if your tests show negative results for celiac disease after three months on gluten? Keep eating it for years, causing more damage, maybe even getting another autoimmune disease or cancer? Those are questions you need to ask yourself now.

Smunkeemom Enthusiast
Smunkeemom
Posted
Have some Krispy Kremes for me!!!

well, if we are going to eat vicariously through her, then eat a Kolache for me!!!

oh, and I agree that if you are having 2nd thoughts about the diagnosis then you should check it out. It's a huge commitment to make when you aren't sure.

penguin Community Regular
penguin
Posted
  • Author
I read that for some people the tests won't be accurate unless they eat gluten for more than a year after being gluten-free for a while. What are you going to do if your tests show negative results for celiac disease after three months on gluten? Keep eating it for years, causing more damage, maybe even getting another autoimmune disease or cancer? Those are questions you need to ask yourself now.

My attitude right now is Celiac until proven otherwise. For some reason, nobody ever tested me for chron's or colitis or anything like that. My mom has been harassing me for at least a year to get tested for those. I also haven't been to see a gastroenterologist about the celiac yet, and I feel that I should. Even if the tests all come back negative, at least I know I'll have done everything I could to be definitive.

If I show negative results, I'll probably still go back to being gluten-free, or at least wheat free. My husband seems pretty confient that it's celiac, and I have more symptoms match celiac than anything else. I honestly don't know, but I have a lot of time to think on it. My GI appointment isn't even until June 15th. I'll cross the bridge when I get to it. Thanks for caring :)

Ursa Major Collaborator
Ursa Major
Posted

Well, checking for chrohns and colitis isn't a bad idea, anyway. You can have those in addition to celiac disease, several people here do. I am glad you are not planning on being on gluten indefinitely, and that you have such a supportive husband. In the end you may have to ignore your mother, as it is your body, not hers.

penguin Community Regular
penguin
Posted
  • Author
In the end you may have to ignore your mother, as it is your body, not hers.

Eh, true enough. I just think she doesn't want something seriously wrong with her favorite kid, to be honest.

I don't know what's going on! I'm starting to get C now...I've never had C in my life! I can go, but I don't feel like I've "emptied out" like I should. Maybe it's because I'm so used to having D all the time I don't know what normal is! The lower parts feel very "active" though, in spite of not having D.

I've gained about 8 lbs since Friday. Not good. That's what, 2 lbs. a day? It's probably because I'm eating a bunch of junk food to make up for the last 4 months, I guess. You wouldn't believe all the crap I bought yesterday when I was shopping. Corn dogs, lasagna, hamburger helper (?!?!), oreos, triscuits AND wheat thins, lucky charms, cream of wheat... I guess that's why people doing a gluten challenge who haven't eaten dinner yet shouldn't go grocery shopping :P

I'm really sleepy, and foggy. I'm surprised I'm not sick. Maybe gluten isn't my problem?

StrongerToday Enthusiast
StrongerToday
Posted

The one time I was brave enough to do a gluten challenge, my first symptom was brain fog - and bad!

Good luck!

CarlaB Enthusiast
CarlaB
Posted

No, that's exactly what I get like when I get a lot of gluten!! If you weren't like that before, and you are now that you are overloading, it sounds like it definately could be a gluten problem!

penguin Community Regular
penguin
Posted
  • Author
No, that's exactly what I get like when I get a lot of gluten!! If you weren't like that before, and you are now that you are overloading, it sounds like it definately could be a gluten problem!

I think my body is confused :blink:

In a normally functioning person, it wouldn't make a digestive difference switching between gluteny-diet to gluten-free diet, right?

Could you describe your lost-of-gluten symptoms for me?

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