New Celiac (July, But Finally Emerging To The Community!)

[fallout1]

Hello all! I've lurked in these forums a bit and figured now would be the time to join the community and introduce myself.

First, my brief story (nothing terribly unique here probably).

On a trip to China this last July (2009), I ate a lot of food. Some of which was contaminated and gave me a nasty bout of diarrhea, cramping,etc. Upon returning home to California, the diarrhea remained. Eventually I went to the Dr. and he prescribed different antibiotics. This helped a bit, but the diarrhea returned. Eventually the Dr. recommended a Celiac blood panel among several other tests. This came back extremely high. (Well over 175 for the antibody count)He then had me eat wheat the next two weeks to make sure we'd have something to go on when returning. I then had an endoscopy which confirmed the presence of Celiac disease. I was told that I am somewhere in the middle of the Celiac spectrum. The endoscopy showed clear damage to the villi, but I register virtually no detectable symptoms to ingestion of gluten. As many other threads on this forum have noted, just because I can't see/feel anything doesn't mean damage is not being done.

It's hard to say when/where this emerged. The Dr. and I feel that getting sick in China triggered the Celiac to activate. But since I don't display any real external symptoms, who knows how many years I've had Celiac disease and not been aware.

That's pretty much been the story since. It's been around 6 months now, and I do feel better in some areas, though I can't say overall I notice a HUGE difference since going gluten-free, though I do seem to be retaining weight better. Like many others, giving up pasta/pizza/beer has been rough, though not too bad. I find myself simply not spending too much time/energy on agonizing over losing wheat products. It's a pain in the ass for sure, but what can I do really? No use in my dwelling on it. I hate being THAT person though, when going out and having to alter plans, mention my restrictions,etc. Luckily I have a supportive and loving girlfriend who doesn't mind eating gluten-free with me at all.

Not to belabor some of these points, but I, like many others have occasionally had a tough time accepting permanent proscriptions and thus have vacillated by wondering if "maybe just one beer a month" or something might be ok since I don't have overt symptoms. The other threads in the forums seem to emphasize the danger in this type of thinking so I feel I should err on the safe side. Thoughts?

I know we know very little about small amounts of gluten ingestion over the long term, but what is the general consensus when accidental ingestion occurs? I guess I'm curious about how bad a small amount of gluten interrupts and negates any villi-regrowth and the healing progress due to inevitable mistakes?

Sorry for the length/questions,etc. You probably hear all this stuff a lot.

Anyway, thanks for maintaining such an encouraging and comprehensive environment here. Celiac sufferers 10 years ago were not near as lucky I'd posit.

-Jordin

[Wolicki]

Hello all! I've lurked in these forums a bit and figured now would be the time to join the community and introduce myself.

First, my brief story (nothing terribly unique here probably).

On a trip to China this last July (2009), I ate a lot of food. Some of which was contaminated and gave me a nasty bout of diarrhea, cramping,etc. Upon returning home to California, the diarrhea remained. Eventually I went to the Dr. and he prescribed different antibiotics. This helped a bit, but the diarrhea returned. Eventually the Dr. recommended a Celiac blood panel among several other tests. This came back extremely high. (Well over 175 for the antibody count)He then had me eat wheat the next two weeks to make sure we'd have something to go on when returning. I then had an endoscopy which confirmed the presence of Celiac disease. I was told that I am somewhere in the middle of the Celiac spectrum. The endoscopy showed clear damage to the villi, but I register virtually no detectable symptoms to ingestion of gluten. As many other threads on this forum have noted, just because I can't see/feel anything doesn't mean damage is not being done.

It's hard to say when/where this emerged. The Dr. and I feel that getting sick in China triggered the Celiac to activate. But since I don't display any real external symptoms, who knows how many years I've had Celiac disease and not been aware.

That's pretty much been the story since. It's been around 6 months now, and I do feel better in some areas, though I can't say overall I notice a HUGE difference since going gluten-free, though I do seem to be retaining weight better. Like many others, giving up pasta/pizza/beer has been rough, though not too bad. I find myself simply not spending too much time/energy on agonizing over losing wheat products. It's a pain in the ass for sure, but what can I do really? No use in my dwelling on it. I hate being THAT person though, when going out and having to alter plans, mention my restrictions,etc. Luckily I have a supportive and loving girlfriend who doesn't mind eating gluten-free with me at all.

Not to belabor some of these points, but I, like many others have occasionally had a tough time accepting permanent proscriptions and thus have vacillated by wondering if "maybe just one beer a month" or something might be ok since I don't have overt symptoms. The other threads in the forums seem to emphasize the danger in this type of thinking so I feel I should err on the safe side. Thoughts?

I know we know very little about small amounts of gluten ingestion over the long term, but what is the general consensus when accidental ingestion occurs? I guess I'm curious about how bad a small amount of gluten interrupts and negates any villi-regrowth and the healing progress due to inevitable mistakes?

Sorry for the length/questions,etc. You probably hear all this stuff a lot.

Anyway, thanks for maintaining such an encouraging and comprehensive environment here. Celiac sufferers 10 years ago were not near as lucky I'd posit.

-Jordin

Jordin,

Welcome to the forum. Well, you are having overt symptoms- the big D You are Celiac and must do a strict gluten free diet. There are some terrible things related to untreated Celiac, like bowel cancer and other really bad things that can be prevented with a gluten free diet. Be safe and be smart and you will live long and prosper

Janie

[Reba32]

I'm with Janie, only gluten free. NO cheating. Just because you maybe don't notice a reaction (though I'd hazard a guess and say that the bout of diarreah was a reaction!) doesn't mean the damage isn't being done.

There are way too many severe health problems that can develop if you continue to eat gluten, I'm not willing to chance it. I went probably my entire life without diagnosis (I'm 42, was just diagnosed in December 09) and I already know my life expectancy is probably a bit shorter than the average because of Celiac disease. Why would I knowingly and willingly make it shorter just for the "pleasure" of a piece of bread or slice of pizza?

Not worth it.

[T.H.]

Welcome to the community!

I was diagnosed right around the same time as you, actually, early August last year. And I would say definitely err on the safe side, as you said, and stay away from gluten 100%.

A gluten free blogger was talking about her GI doc, and he described it in a way that really made me think about what eating gluten every once in a while is like. He had said, gluten is like a bowl of ground glass. It really damages us inside. So if we looked at a bowl of this ground glass, would we think that eating just a little bit every once in a while would be okay?

Probably not, yeah?

My own GI doctor is a little firecracker of a guy, and he was VERY adamant about staying off gluten. He was telling me things like this:

After a celiac eats gluten, he is immuno-compromised for a while afterwards, so he's more likely to get ill, or to have an illness get worse. I know sometimes that doesn't seem like that much of an issue, really - so we get sick a little more, no big deal, right? But I was immuno-compromised like this, before I was diagnosed, at the worst possible time. I caught an illness that usually stays in the lungs and lasts for a few weeks, but because I was immuno-compromised when I caught it, it spread throughout my body and I could barely walk for 12 months. I try to remember that when I'm looking at things to eat I shouldn't...it definitely helps!

Also, my doc was saying the damage to the cilia can take as long as 2 weeks to heal, depending on the person, and while it is healing, a celiac is not absorbing vitamins and minerals as he should, so that increases his risk of illness and damage to his body, as well.

Risks of all sorts of stuff goes up: developing kidney stones, cancers, ulcers, infections...the list just goes on and on. Basically, my doc said to be as vigilant as possible, make the entire house gluten free if possible, and be very aggressive in self-advocating when eating out. Being 'that person,' as you put it, which I really hate as well. Frustrating!

He didn't say what periodic ingestion on accident would do, but it sounds like it's something to avoid if at all possible, and to be extra careful for the following couple of weeks after you've been 'glutened'. Take extra vitamins, eat very healthy and drink lots of water, avoid sick people, that sort of thing.

I wish you good luck on sticking to the diet! :-)

Not to belabor some of these points, but I, like many others have occasionally had a tough time accepting permanent proscriptions and thus have vacillated by wondering if "maybe just one beer a month" or something might be ok since I don't have overt symptoms. The other threads in the forums seem to emphasize the danger in this type of thinking so I feel I should err on the safe side. Thoughts?

I know we know very little about small amounts of gluten ingestion over the long term, but what is the general consensus when accidental ingestion occurs? I guess I'm curious about how bad a small amount of gluten interrupts and negates any villi-regrowth and the healing progress due to inevitable mistakes?

Sorry for the length/questions,etc. You probably hear all this stuff a lot.

Anyway, thanks for maintaining such an encouraging and comprehensive environment here. Celiac sufferers 10 years ago were not near as lucky I'd posit.

-Jordin

[Raleigh333]

Hello everyone,

Just here for some support and advice and to share my situation. Officially diagnosed after my endoscopy last Friday (feb 5 2010). I've read so many stories that are just like mine and it just aggravates me how many professionals aren't aware of this. Here's my story in as few words as possible:

October 2006 I had my appendix removed. While in the hospital they noticed a high TSH and diagnosed me with Hashimoto's and I was put on synthroid. Followed up with a GI doctor about 6 months later (waited longer than I should have) and he did celiac blood work without me knowing. That came back positive so I had endoscopy #1--end of 2007. That came back normal so the doctor said I didn't have celiac's disease but that if I felt good on the food then just give it a try. He also said if anything that i'd have IBS or mild mild Crohn's. Turns out the damage just had not yet been done to my intestines. Moved away for a job, and the thought of having Celiac Disease has been in the back of my mind ever since. Learned a lot about it and felt like the symptoms describe me very well. Decided to get a second opinion and again had positive bloodwork Jan 13 2010 and now finally the duodenum showed abnormalities Feb 5 2010.

I'm glad to have the diagnosis 100%, even though it's difficult. I want to kick myself for not getting a second opinion sooner, but I'm also thankful because I am almost 25 and should be healed enough to not have to deal with infertility problems related to this when it's time to have children. It's difficult to explain to people because they think it's a diet they should try. It just gets lonely, I have no family where I am, and I'm getting paranoid about crumbs and my students' snacks!

CHEATING:

Never plan on doing it, hope it never happens. I think about how much I can prevent long term by following the diet perfectly. Family has asked what a little bit does to you, and I don't know how to answer it. Now that I have the pictures of my damaged duodenum I want that damage to go away and never come back, as well as all the symptoms (steatorrhea, joint pain, migraines). I'm not gonna lie it's ran through my head to think maybe on new years i'll cheat, or maybe on my birthday i'll cheat....but I really can't justify that in my head, and I'm sure I would just feel guilty after. I think about how i've been working my butt of cooking and grocery shopping...and to do all that work perfecting your meals and then ruin it. Also the guilt later on finding out about more severe problems (cancer) from not following the diet. I've already wasted years consuming gluten so I'm taking vitamins and eating very healthy in hopes to go in reverse! My friend's boyfriend has celiacs and she's mentioned that he isn't careful with sauces and all those hidden sources and will end up in the bathroom for way too long. His levels aren't as low (obviously) as his doctor's would like so that shows that a little amount here and there is still causing a response.