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DarkIvy

Hey There... Self-introduction :)

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Hey all,

I've been lurking for a few days and decided I should probably introduce myself at some point and say hi!

I've been showing symptoms for a while now, but more noticeably for the last several months. I've been really bloated/gassy, have had a lot of diarrhea, excessively dry itchy skin, inability to gain back weight that I've already lost, depression, anxiety, inability to focus... the list goes on forever. One of the worst things for me was the fatigue- it doesn't matter how much sleep I get, I'm still too tired to do by best in school. Since January, I've been getting migraines for the first time in my entire life. I was getting them about once every two weeks or so.

Generally, I just felt like crap. I've been to doctors in the past about some of these symptoms. I can remember seeing a doctor a couple of years ago about the fatigue, but never figured anything out. I've been really bloated for a good three years.

Well, a few weeks ago I started thinking about my grandma, who has celiac. I started doing a bit of research into it, more for the sake of curiosity than anything else. The more I read, the more I felt like I could relate. Considering celiac can be hereditary, I kind of guessed that there was a possibility that was it. So, I decided to go gluten-free, just to see what would happen. It actually helped. Most of my symptoms have disappeared. Physically, I feel so different! I'm more awake, can focus, actually have an appetite for once, and the poop/gas issue is improving a lot. I've been talking to my parents and grandma a lot for support and advice while I kind of "go through" this.

It's been hard, especially because I live in a dorm and can't make my own food. I've been surviving off of gluten-free frozen meals (particularly Amy's brands) and other kinds of things, as well as eating out at the few restaurants that seem capable of accommodating this kind of diet. Luckily, I'm moving back home tomorrow and then it will be a lot easier to deal with. Thankfully both of my parents are already very aware of celiac, thanks to my grandma, and thus how to deal with it. It will be easier to convince them that we need to tear apart/clean everything/keep my food separate because of that.

I've got a doctor's appointment coming up on the 16th, and I've scheduled an appointment with a gastrointestinal specialist for the 29th. It's just a preliminary sort of thing, I won't have any tests done until after that. Which is kind of frustrating.

I haven't really gotten any useful information on when I should start eating gluten again before the tests. And since I don't even know when the tests are, it probably wouldn't help. I would like to get tested, just for peace of mind. What's the general time that one needs to be eating gluten before bloodwork or the other tests? I've heard everything from two weeks to three months. I've only been on a gluten-free diet for about two and a half weeks. I'm not looking forward to eating it intentionally, though I do miss "greasy college pizza". I ate something today that said "gluten free" but also that it was processed in a plant with gluten, which probably wasn't the best idea, though I've had other things like that without any problems. I started to feel sick about 30 minutes after I ate it: just generally very blah. It's been about 7 hours now, and I'm still gassy and really fatigued, I can feel the obligatory headache coming on. If I have to go back to eating gluten for more than a couple of weeks, I may just decide that it's not worth it to get an actual diagnosis.

But anyway, that's my story and that's why I'm here. You guys all seem very nice and helpful, so I'm glad to be here!


Liz

GLUTEN FREE 06/13/07

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Welcome! I hope we can all help you out. Sounds like you're on the right track so far - good for you to figure it out.

As for doing a gluten challenge, someone else will be more knowledgable than I am. I think you need to be eating a significant amount of gluten for several months before testing, but it probably depends on how long you've been gluten-free before that.

Hopefully you'll get more responses tomorrow - it gets quiet here at night.


Liz

Started Specific Carbohydrate Diet on 8-16-09 because son was diagnosed with Ulcerative Colitis and want to give him moral support.

Diagnosed with Minimal Change Nephrotic Syndrome in 2003. Discovered that going completely gluten-free put me in remission.

I would have despaired unless I had believed that I would see the goodness of the Lord in the land of the living. Psalms 27:13

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Hi, and welcome!

Good for you for figuring things out, and congratulations on the great improvement!

People here seem to have different degrees of diagnosis, and different "needs" for having a doctor's diagnosis!

As for me, I did the Enterolab test which had been introduced to me by a family member whose doctor was encouraging her to do it. I was looking for an answer to my long term problem with constipation. Before I got the results, I left for China where I work for 10 months of the year. I knew very little about celiac at the time.

I called my allergist from out here about the test results. He's a great doctor who has well earned my trust. He told me the real issue was do I have clinical improvement on the gluten free diet? He said to be as strict as I can for three months at which time many of his patients will have a sense if they are improving, i.e. this is the right direction.

So I wrestle with do I need further diagnosis? I am new to the diet like you, with not such dramatic improvement but a definite positive improvement in the constipation. Perhaps being able to say to people, "the doctors have confirmed with biopsy that I am celiac" might help with some people. But maybe saying, "I've discovered I am very sensitive to gluten and become quite ill when I ingest any amount" is enough.

Someone said that there is a plus about being not "diagnosed" if you change insurances because they can't eliminate your pre-existing condition.

Whatever you decide, you will find support at this forum! Best wishes!!


4/2007 Positive IGA, TTG Enterolab results, with severe malabsorption: Two DQ2 celiac genes--highest possible risk.

gluten-free since 4/22/07; SF since 7/07; 3/08 & 7/08 high sugar levels in stool (i.e. cannot break down carbs) digestive enzymes for carbs didn't help; 7/18/08 started SCD as prescribed by my physician (MD).

10/2000 dx LYME disease; 2008 clinical dx CELIAC; Other: hypothyroid, allergies, dupuytrens, high mercury levels

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Just my opinion, but, DarkIvy, the best thing if you want to pursue an official diagnosis is to go back on gluten NOW. The longer you're gluten free, the more your intestines will heal, the more likely it is you'll get a false negative on the tests. Besides, the longer you're gluten free, the more difficult it is to make yourself eat it again! Better to keep eating gluten from now until your tests. After you've had all the testing, there's nothing to stop you from going gluten free, whether they are positive or not.

Keep in mind that a lot of adults show negative in the blood test but positive in a biopsy. You should insist on a biopsy even if the blood test isn't positive. A lot of doctors aren't aware of this.

On the other hand... I was gluten free for six weeks before my blood test. I was going to eat gluten for a few weeks and then go be tested but after one day back on gluten I was so sick I couldn't take it. I went to have blood drawn that night. The results were negative. I never pursued further testing because frankly, I can't imagine ever putting gluten in my mouth ever again, and a positive diagnosis wouldn't change anything. After all, the diet is the same. But I know a lot of people find it difficult to stick to the diet if they don't have an official diagnosis saying they should.

Pauliina

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Hey again!

Thanks for taking the time to reply.

I called up the GI today that I'm seeing in a couple of weeks to get their opinion and was told that all I would really need to get a conclusive test result is to eat gluten somewhat normally for a couple of days before the tests. Evidently a reaction is a reaction and it shouldn't take much more than that to show up if it's there.

Seems tolerable, I think I'll go with that. I can deal with eating it for a couple of days: if that's really all it takes then it's probably worth it. But does that seem right? Has anyone else heard that before? To me it makes sense but I've heard anything and everything and am having a hard time putting together the "right" way to go.


Liz

GLUTEN FREE 06/13/07

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I'm afraid that's just not true. If you read at bit on the parent site, celiac.com, there might be some articles about testing.

Of course, if you have a lot of damage to your intestine already it won't all heal in a month. But you do have a bigger risk of a false negative result, and if your tests come back inconclusive, what are you going to do?

Of course, if you feel very reluctant to eat gluten, that also tells you something. :)

Good luck with the decision.

Pauliina

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I'm afraid that's just not true. If you read at bit on the parent site, celiac.com, there might be some articles about testing.

Of course, if you have a lot of damage to your intestine already it won't all heal in a month. But you do have a bigger risk of a false negative result, and if your tests come back inconclusive, what are you going to do?

Of course, if you feel very reluctant to eat gluten, that also tells you something. :)

Good luck with the decision.

Pauliina

Thanks for the advice.

These are basically the arguments I've been wrestling over in my head.

Testing would be nice to have behind me, just so that when I go into a restaurant or to someone's house I can say "it's celiac" without having to second-guess myself. That's the biggest reason I want to get tested. Just to have that "doctor says so!" behind me in case anyone is ever a pain about it.

However, I guess it's not everything. It seems a lot of people on this forum haven't been officially diagnosed and are perfectly happy being gluten free despite that. My mom has already gone and bought me a designated gluten free toaster oven, crock pot, mixing bowl, and other cookware. My dad says he's 100% sure that celiac is the issue. He also says he sees a major change in my attitude the last couple of weeks, noting that I'm much easier to get along with. Even my boyfriend has learned to read labels and to be careful with his crumb-age. Whatever the results end up being, I've got the support of those around me and I feel better enough already to justify staying gluten-free indefinitely.

You're absolutely right about my reluctance to eat gluten saying a lot... I mean, I can't honestly say I've been craving anything with gluten in it. I don't really miss it, and since I've found some really tasty gluten free cookies I've been even less inclined to break the diet. I just wish I would have listened to my body sooner! Again, even if the results don't end up positive, I'm pretty sure I'll continue being gluten-free.

However, I think that if I'm going to bother at all with testing in the first place, I might as well do it right. As much as I hate to, I'll probably start eating gluten again tomorrow. Yuck.


Liz

GLUTEN FREE 06/13/07

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Guest lizajane

I am also new to this site-didn't know it was here until I ordered food fron gluten free mall!! Anyway, I was dxed 23 years ago and have struggled with finding food, other people with the disease, information ON the disease, etc. I have done everything the hard way-reading every label, not doing enough research on the computer, etc. I should have just gone to a GI> Dr. in Salt Lake City--closest g.i. doctor, and had him help me. I am so glad to have found this site, but also to now be on the right track with my disease. I do have it more in control than I did even 10 years ago. Still miss the good food, but I always tell people I remember the taste of the good food, and I don't want the repercutions of eating the good stuff, so they can just go on eating in front of me!! People are forever appoligizing for eating in front of me! I wish I could get them to really understand how sick we get when we eat food with gluten in it so they would just be normal about their eating habits! How do others handle eating around other people when they keep saying how sorry they are?

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DarkIvy, good luck with the gluten and testing! I hope you won't get too ill and... well this sounds odd but I almost hope you do get a positive test result! Because then you have confirmation and a doctor backing your diet up.

Cool that your family is so supportive. :) Mine is too, even though I don't have an official diagnosis. It's so obvious that I feel much better.

Lizajane, it's strange, but for some reason people don't apologize when they eat gluteny food in front of me. Or maybe they do but I forget about it? In any case, I almost always have my own food with me everywhere, and I just eat that and mind my own business. And I really like my food... maybe that's what people pick up nand so they don't feel apologetic?

Pauliina

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Maybe this will help...

----

https://www.celiac.com/st_prod.html?p_prodi...-53107206925.5a

Each patient has different sensitivity to gluten for reasons that are unclear. The period of gluten challenge and the amount of gluten necessary to provoke serological immune response are individually different.

A 0.3 g/kg body weight/day of single gluten challenge causes immunological changes (cellular immunity) in the intestine (J Pediatr Gastroenterol Nutr 1989; 9:176-180) in patients on a gluten-free diet, however, the serological response is much slower.

Our recommendation is to ingest at least 0.3 g/kg/day of gluten for two months prior to the serological tests. However, if somebody experiences symptoms during the gluten challenge we recommend to perform serological tests earlier.

The protein content of wheat flour is between 7-15% and approximately 90% of the protein content is gluten. That means a slice of bread may have 2-3 g of gluten.

-------


Karen B.

diagnosed with Celiac Nov. 2003

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I am also new to this site-didn't know it was here until I ordered food fron gluten free mall!! Anyway, I was dxed 23 years ago and have struggled with finding food, other people with the disease, information ON the disease, etc. I have done everything the hard way-reading every label, not doing enough research on the computer, etc. I should have just gone to a GI> Dr. in Salt Lake City--closest g.i. doctor, and had him help me. I am so glad to have found this site, but also to now be on the right track with my disease. I do have it more in control than I did even 10 years ago. Still miss the good food, but I always tell people I remember the taste of the good food, and I don't want the repercutions of eating the good stuff, so they can just go on eating in front of me!! People are forever appoligizing for eating in front of me! I wish I could get them to really understand how sick we get when we eat food with gluten in it so they would just be normal about their eating habits! How do others handle eating around other people when they keep saying how sorry they are?

I tell people it's like having stomach flu for the next week. That's something most people can relate to.

The only thing that really gets to me are those food I miss and can't replace. However much I've tried, I can't reproduce the taste of Popeye's spicy chicken or the smooth, well seasoned taste of Kentucky Fried Chicken, so I just make it a point to be elsewhere when it's around. My co-workers talk about my willpower but I've told them if you go off of a weight reduction diet all you get is fat -- getting sick is much more powerful incentive to stay on it. Wellshire Kids frozen chicken nuggets have helped me out on this a few times because I can just nuke it and it's good to go (goes great with BBQ sauce for dipping)

The only real problem I run into is at work. We're a small group and our manager tends to organize things around group breakfasts and lunches. When someone says they'll bring the juice, they don't realize the off-brand, calcium added orange juice can be a problem for a Celiac. When you have 10 people in line to get a plate, it's not a good time to stop and study the labels. I've dealt with it by everyday bringing my cold-pak with my food and by now, they just seem to know I'm going to drink my own drink.

It helps that I've shared some of my gluten-free goodies around the office and now have major fans of the Chebe rolls and anything made from Namaste spice cake mix. I made some spice cookies from the Namaste mix around Christmas that were wiped out by lunch. A 10 person group wiping out 4 dozen cookies... well, no one feels sorry for me having to eat gluten-free food. That I can't eat their food, sometimes but they know the food I eat is tasty and nutritious.


Karen B.

diagnosed with Celiac Nov. 2003

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DarkIvy, good luck with the gluten and testing! I hope you won't get too ill and... well this sounds odd but I almost hope you do get a positive test result! Because then you have confirmation and a doctor backing your diet up.

Cool that your family is so supportive. :) Mine is too, even though I don't have an official diagnosis. It's so obvious that I feel much better.

Lizajane, it's strange, but for some reason people don't apologize when they eat gluteny food in front of me. Or maybe they do but I forget about it? In any case, I almost always have my own food with me everywhere, and I just eat that and mind my own business. And I really like my food... maybe that's what people pick up nand so they don't feel apologetic?

Pauliina

Yeah, I almost hope I test positively, as well. Well, I do, because after I take that stupid thing I'm never willingly eating gluten again.

I ate some cinnamon toast this morning on regular wheat bread... ohhh geez. Sometimes it's not until you're away from the problem for a while and reintroduce it that one realizes how bad it really was/is. I'm SO wiped out. I've got so much to do today but am too tired to do it. No wonder I was having trouble getting to class and studying :/ Luckily the other symptoms haven't (yet) returned but I know it's just a matter of time. Gross.

People rarely apologize to me, either. I don't mind. Most of my friends just give me permission to raid their kitchens for something I can eat. Though a couple weeks ago, right as I was going gluten-free I ended up going over to someones house for a sorority "family dinner" complete with pizza and Grey's Anatomy. The next day I recounted the event to some of my other friends, and mentioned that it sucked having to watch all my friends eat pizza. One of the girls in the room popped out of her seat and said "oh my gosh! That reminds me! I have pizza in my fridge! BRB!!!" She went up three flights of stairs to get the pizza, brought it back downstairs, heated it up in the microwave and ate it in front of me. I mean, I guess I don't really care except that I had JUST got done explaining that I missed pizza. :o


Liz

GLUTEN FREE 06/13/07

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Maybe this will help...

----

https://www.celiac.com/st_prod.html?p_prodi...-53107206925.5a

Each patient has different sensitivity to gluten for reasons that are unclear. The period of gluten challenge and the amount of gluten necessary to provoke serological immune response are individually different.

A 0.3 g/kg body weight/day of single gluten challenge causes immunological changes (cellular immunity) in the intestine (J Pediatr Gastroenterol Nutr 1989; 9:176-180) in patients on a gluten-free diet, however, the serological response is much slower.

Our recommendation is to ingest at least 0.3 g/kg/day of gluten for two months prior to the serological tests. However, if somebody experiences symptoms during the gluten challenge we recommend to perform serological tests earlier.

The protein content of wheat flour is between 7-15% and approximately 90% of the protein content is gluten. That means a slice of bread may have 2-3 g of gluten.

-------

Thanks for the info.

I went ahead and read the whole article. Today was exactly the third week of my being gluten free. It hasn't been the several months that they talked about in the article, so hopefully it won't take as much time. I've already eaten two slices of bread today, so that's more than the reccommended amount right there.


Liz

GLUTEN FREE 06/13/07

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Thanks for the advice.

Testing would be nice to have behind me, just so that when I go into a restaurant or to someone's house I can say "it's celiac" without having to second-guess myself. That's the biggest reason I want to get tested. Just to have that "doctor says so!" behind me in case anyone is ever a pain about it.

However, I think that if I'm going to bother at all with testing in the first place, I might as well do it right. As much as I hate to, I'll probably start eating gluten again tomorrow. Yuck.

This might be a reason to consider NOT getting an official diagnosis: some of the people on this board have had experience of being denied health/life insurance or getting hit with heavy premiums for having "official" celiac diagnosis.....


Husband has Celiac Disease and

Husband misdiagnosed for 27 yrs -

The misdiagnosis was: IBS or colitis

Mis-diagnosed from 1977 to 2003 by various gastros including one of the largest,

most prestigious medical groups in northern NJ which constantly advertises themselves as

being the "best." This GI told him it was "all in his head."

Serious Depressive state ensued

Finally Diagnosed with celiac disease in 2003

Other food sensitivities: almost all fruits, vegetables, spices, eggs, nuts, yeast, fried foods, roughage, soy.

Needs to gain back at least 25 lbs. of the 40 lbs pounds he lost - lost a great amout of body fat and muscle

Developed neuropathy in 2005

Now has lymphadema 2006It is my opinion that his subsequent disorders could have been avoided had he been diagnosed sooner by any of the dozen or so doctors he saw between 1977 to 2003

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According to my math, you need at least 7-10 slices a day, depending on the gluten content of each slice.

Another commnet:

i am trying to enroll in a clinical study (if theyaccept me, I am not DQ2 or8) for a new 3-day test for celiac they are working on. You eat gluten for three days and then they test you. It is not routine yet, they are jsut studying it. There is a trial going on here in Norway and I have read some articles from somwhere else about the tests.

[url=http://gut.bmj.com/cgi/content/abstract/54/9/1217?ijkey=f3879fc773e157f0569a2e7967cc5872be03f764&keytype2=tf_ipsecsha

nora


gluten-free since may 06 after neg. biopsy symptoms went away and DH symptoms which I had since 03 got gradually better.

daughter officially diagnosed celiac and casein intolerant.

non-DQ2 or DQ8. Maybe DQ1? Updated: Yes, double DQ5

Hypothyroid since 2000, thyroxine first started to work well 06 on a low-carb and gluten-free diet

Lost 20 kg after going gluten-free and weighing 53 kg now. neg. biopsy for DH. Found out afterwards from this forum that it should have been taken during an outbreak but it was taken two weeks after. vitaminD was 57 nmol/l in may08)

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According to my math, you need at least 7-10 slices a day, depending on the gluten content of each slice.

Another commnet:

i am trying to enroll in a clinical study (if theyaccept me, I am not DQ2 or8) for a new 3-day test for celiac they are working on. You eat gluten for three days and then they test you. It is not routine yet, they are jsut studying it. There is a trial going on here in Norway and I have read some articles from somwhere else about the tests.

[url=http://gut.bmj.com/cgi/content/abstract/54/9/1217?ijkey=f3879fc773e157f0569a2e7967cc5872be03f764&keytype2=tf_ipsecsha

nora

Oh geez, you're right. I didn't even notice the "per kg per day" thing. <_< It seems a *little* excessive to me, though. I could be wrong, but if all it takes is a little bit to get a reaction, then why would it take so much to diagnose it? The two slices of bread and small amount of pasta I had yesterday were MORE than enough to knock me on my butt... and I really can't think of many people who regularly consume that much wheat on given day to begin with. I guess I don't quite understand what they're really talking about when they mention a "gluten challenge" though, and I haven't been off of gluten for several months, anyway.

This is a lot of confusing information.

As for those trial tests, from the link I wasn't able to find any locations... I'm in the US, though.


Liz

GLUTEN FREE 06/13/07

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Maybe this link works better

http://gut.bmj.com/cgi/content/full/55/7/1037 about half-way down a small chapter.

It means that if one hads been gluten-free, then after three days they can detect some fresh-activated somethingIdon'tknow...

Here is the abstract from one article in gut:

" Gut 2005;54:1217-1223; doi:10.1136/gut.2004.059998


gluten-free since may 06 after neg. biopsy symptoms went away and DH symptoms which I had since 03 got gradually better.

daughter officially diagnosed celiac and casein intolerant.

non-DQ2 or DQ8. Maybe DQ1? Updated: Yes, double DQ5

Hypothyroid since 2000, thyroxine first started to work well 06 on a low-carb and gluten-free diet

Lost 20 kg after going gluten-free and weighing 53 kg now. neg. biopsy for DH. Found out afterwards from this forum that it should have been taken during an outbreak but it was taken two weeks after. vitaminD was 57 nmol/l in may08)

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Ivy, good luck.

Everyone has their opinions on the validity of 'diagnosis'. If it were me ( a 44 year old housewife and mom), havinfg a dx'd realtive, and simply improving on a gluten-free diet would be enough for me.

however, as a college student...you probably have the right to request special meal details - either a fridge in your dorm, a transfer to a kitchenette type of room, or to have the cafeteria provide you with foods you can eat. Interestingly, I just read about that exact issue in the Scott-Free newsletter.

In fact, Scott Adams, who is the creator of this site, I believe he mentioned he has a child in college as well.

Back to the point, if you think you may be needing those special services, you are probably gogin to need an official DX. Again, good luck.

HEIDI

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Ivy, good luck.

Everyone has their opinions on the validity of 'diagnosis'. If it were me ( a 44 year old housewife and mom), havinfg a dx'd realtive, and simply improving on a gluten-free diet would be enough for me.

however, as a college student...you probably have the right to request special meal details - either a fridge in your dorm, a transfer to a kitchenette type of room, or to have the cafeteria provide you with foods you can eat. Interestingly, I just read about that exact issue in the Scott-Free newsletter.

In fact, Scott Adams, who is the creator of this site, I believe he mentioned he has a child in college as well.

Back to the point, if you think you may be needing those special services, you are probably gogin to need an official DX. Again, good luck.

HEIDI

Yeah, exactly. I won't be living in the dorms again next year, but in a sorority house. If I get DXed, our cook can prepare special meals for me. Thankfully, he's excellent and I don't think this will be a problem. It also means that I can use the kitchen to make my own meals and possibly store my own appliances (toaster oven, crock pot, etc) either in my own room or in the kitchen somewhere. If worse comes to worse and living in the house doesn't work out, I'll be able to petition to move out and find an apartment.


Liz

GLUTEN FREE 06/13/07

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Hey again,

Just thought I'd update everyone.

I saw my regular doctor today for a checkup and told her all about everything and though it might be celiac, since it runs in my family. I told her I'd gone gluten free for three weeks and all of the symptoms cleared up, and when I went back to eating it for testing purposes they all came back. I wasn't expecting a very good reaction, but it turns out she has a couple other patients with celiac and thought it might be reasonable to assume that it was the problem. Within 20 minutes I was downstairs in the lab getting blood drawn... she ordered the celiac panel and a test for anemia, noting that anemia is often associated with celiac. I was really impressed and glad that she actually knew what she was talking about. She even made a note to have the blood work results sent over the my new GI so that they can take a look at it, too. I already knew it, but she said the bloodwork isn't always conclusive and that it's still best to have the endoscopy done.

After all of the horror stories I've heard concerning doctors and celiac, I was NOT expecting this at all! It's good to know that my doctor actually has a clue :)

And I'm also glad I started eating gluten again last Sunday... the bloodwork would have been totally useless if I hadn't.


Liz

GLUTEN FREE 06/13/07

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