Could You Answer A Few Questions?

[Gamecreature]

Howdy gang,

I have recently been diagnosed with Celiac Disease (my bloodtest came back positive last week and I get to see the GI doc next week) so I still have a mountain of questions.

I wanted to find a support group in my area but have so far not had any luck tracking anyone down. Seems like there's plenty of people meeting miles from here, but none in this fairly well populated region - wonder what that says about the number of missed celiac disease diagnoses out here. But I digress.

I think I've got a good handle on the diet. I'm already feeling better. I had one accidental glutening and I certainly don't want to do that again. I'm still far from 100% (I'm achey and my belly feels like I've done 100 sit ups) but my head is clearer and the queeziness is nearly gone.

My main wonders are about how to cope - for instance, how do I break the news to folks, or should I even do it at all? This is all very new to me and I'm not really sure what the next step is.

I've got other questions, but those are the highlights. So let's trade some questions and answers.

Thanks!

Gamecreature

Male - 45

Chicagoland (Northwest Suburbs)

[brendygirl]

Howdy gang,

I have recently been diagnosed with Celiac Disease (my bloodtest came back positive last week and I get to see the GI doc next week) so I still have a mountain of questions.

I wanted to find a support group in my area but have so far not had any luck tracking anyone down. Seems like there's plenty of people meeting miles from here, but none in this fairly well populated region - wonder what that says about the number of missed celiac disease diagnoses out here. But I digress.

I think I've got a good handle on the diet. I'm already feeling better. I had one accidental glutening and I certainly don't want to do that again. I'm still far from 100% (I'm achey and my belly feels like I've done 100 sit ups) but my head is clearer and the queeziness is nearly gone.

My main wonders are about how to cope - for instance, how do I break the news to folks, or should I even do it at all? This is all very new to me and I'm not really sure what the next step is.

I've got other questions, but those are the highlights. So let's trade some questions and answers.

Thanks!

Gamecreature

Male - 45

Chicagoland (Northwest Suburbs)

Hello

Good to hear you are feeling better. It is hard for others to understand. They usually underestimate the difficulty of the diet and assume you just don't eat bread. I went through a fear of eating- I was glutened several days in a row and didn't know the culprit- My mom said, What do ya mean you haven't eaten all day? Just eat pasta!

I would recommend e-mailing them the CBS special from cbs.com

It's just enough to educate but not too much as to confuse.

[GFBetsy]

Welcome!

An answer you didn't ask for is: your GI doc is likely to want to do a biopsy, which is less likely to be accurate if you are on a gluten free diet. (As you can tell by the way you are feeling, going gluten free when you've got celiac can lead to some very rapid healing.) So, if you are feeling like you really need that Biopsy proven positive result, you may want to start eating gluten again. Maybe you could call the GI doc and ask the nurse (or have her ask the doctor) what the doc. wants you to do. On the other hand, if the fact that you are feeling better already is enough proof for you, don't worry about going back on gluten. Just stay off it and feel healthy! (But be prepared to say "No, Thanks!" when the doctor wants you to go back on gluten so he/she can test you again!)

As far ask breaking the news to your folks goes, I guess that depends on the kind of relationship you have with them. My family would definitely want to know if I had been diagnosed with a life-changing genetic illness. After all, if you ever visit with them, your dietary needs are going to be an issue. Also, celiac disease is genetic, which means that you inherited the dang thing from (at least) one of your parents. And any first degree relatives of yours (siblings, children, parents) really should be tested, too, as they have a 1 in 10 chance of having celiac as well. (And that is true even if they are not having any of the same symptoms you have had.) I think I'd probably call my mom and say: "You know how crummy I've been feeling? Well, the doctors finally figured out why! I've got celiac and . . . " and then you get to talk all about it!

Good luck! And please ask again if there's anything you need to know. This is a great place to find answers and support.

[LKelly8]

Howdy Gamecreature!

Here's a list of Open Original Shared Link in Illinois.

As far as telling people, I'm fairly open about it - I'd rather they get used to the idea before they invite me to dinner and I spring, "Oh, by the way, I have a genetic autoimmune disease which makes me deathly afraid of the wooden spoons in your kitchen."

(wooden spoons can harbor gluten)

[Adelle]

Hey! Welcome and congrats on finding the root cause of your sickness!

I told everyone right away. Mostly cause I was VERY sick (everyone knew that) and I was terribly happy I found out what it is! Yay!

As for the biopsy? I say don't bother! Painful, invasive, not very accurate. No thanx! I had a positive blood test (although I'd been on the diet for a week), and my dietary results were amazing! I would never go back on gluten! Just my 2 sense!

What to do now?? Heal! Relax, give urself some time to just recover. Yay!

[Gamecreature]

Howdy Gamecreature!

Here's a list of Open Original Shared Link in Illinois.

Thanks. I've contacted a couple of the groups that are closer than 90 minutes away, but I'm still waiting for a response.

As far as telling people, I'm fairly open about it - I'd rather they get used to the idea before they invite me to dinner and I spring, "Oh, by the way, I have a genetic autoimmune disease which makes me deathly afraid of the wooden spoons in your kitchen."

(wooden spoons can harbor gluten)

Yep, avoiding contamination in my kitchen is going to be a long, uphill battle - I've got two teens who can barely be expected to pick up after themselves under the best of conditions!

[CarlaB]

The GI doc, as mentioned before, is probably going to want to do a biopsy because that's what they do. Since you're already gluten-free, and they will have to schedule the biopsy probably a few weeks from now, it will probably come back negative. Personally, I'd take the positive blood test and positive dietary response and get on the path to healing without worrying about more diagnosing.

We have six kids. Two of us are gluten-free, but all of us are gluten-free at home. That just simplifies things with careless teenagers. The only gluten food I buy is prepackaged snack food for them to take with them ... not to eat at home. They even consider pizza to be a good weather food since they have to eat it outside. Since I have two genes for gluten intolerance, they are all susceptible to developing it, so it's probably better for them anyway to not eat as much gluten.

[Gamecreature]

Hey! Welcome and congrats on finding the root cause of your sickness!

I told everyone right away. Mostly cause I was VERY sick (everyone knew that) and I was terribly happy I found out what it is! Yay!

As for the biopsy? I say don't bother! Painful, invasive, not very accurate. No thanx! I had a positive blood test (although I'd been on the diet for a week), and my dietary results were amazing! I would never go back on gluten! Just my 2 sense!

What to do now?? Heal! Relax, give urself some time to just recover. Yay!

Yep, I think I need to let folks know. I'm just trying to figure out the right words.

I think my best course of action with the biopsy is to talk it over with the doc. It would be nice to know the extent of the damage and how long before the villi recover - my stomach's in a very delicate state right now and I get terrible heartburn from even the mildest of seasonings. It would be nice to know how long I need to avoid some genuine mexican food, chili and spaghetti sauce. Also, I'd like to know why I'm getting an uncomfortable gastric reaction after eating an ordinary apple.

I'm watching what I eat like a hawk, but I still haven't come to grips with how this makes me feel. Is that weird?

[sagemoon]

Hi Gamecreature,

Welcome! I just read all of the above and want to add my 2 cents. I was diagnosed in January of this year after years of gas, acid reflux, all-nighter heaves, ADD and debilitating reactive arthritis. What an incredible relief it was to finally find out what my problem was and that it was as simple as eliminating a food! Now, that comment about simple just now, well, it's kind of like the reward and punishment theory, something that should seem like a reward now feels like a punishment. Gluten is in all of my favorite foods. I am just so thankful that I did not have any further damage done (that I know of) to my body via auto-immune disease and do not have to undergo some strenuous drug therapy (some therapy, but nothing awful). In the realm of diseases, we are very lucky to have this one.

OK, I yelled it from the rooftops when I got my diagnosis. 99% of everyone were confused, and most were not curious enough to ask about the details. I must admit that I talked ad nauseum about Celiac to anyone who had the misfortune of being in my presence for the first few months. In hindsight, I think it was more for me than for them, I was just so happy that I wasn't a complete psycho. Since it is a genetic disease, I did hound my family to get the genetic testing. Unfortunately, I read in Scott's last newsletter (BTW, absolutely THE BEST information out there about our disease and other food allergies - do yourself a huge favor and subscribe, you will not regret it) that the gene testing does not eliminate gluten intolerance or wheat allergy even if it comes back negative for Celiac and that relatives of Celiacs are more prone to these problems. My siblings were tested but my parents refuse to do it. It isn't the money or the process, they are just old, stubborn farts. My Dad thinks that if you are told you have a disease, then you will get it, and if you don't know about it, you won't get it. My Mom just can't be bothered with the whole dreary business. They are both closing in on 90 and figure they've made it this far.... But, I did write to my aunts and uncles to let them know just in case there is someone on their side that has issues that may turn out to be Celiac. So I feel my familial responsibility is completed. At a dinner at my Moms recently, she insisted dinner was a surprise and then poured canned gravy all over a roast before I could stop her and then stuffed the can way down into the garbage. As if I haven't gone garbage diving before, sheesh. I fished it out and read the label, wheat 2nd ingredient, and then she pouted all evening because I wouldn't eat the roast. I was really mad, but kept my thoughts to myself and ate the yam instead (and drank the wine). It wasn't worth the fuss. So just be prepared that many will not believe it is a real disease and try to keep your cool, insist on knowing all of the ingredients, and let them know surprises are not welcome.

I also tended to project my disease upon everyone, but that is pretty normal (look at that, I referred to myself as normal *hee hee*) and since the symptoms are all over the board with this disease, anything looks like it. I hold my tongue now unless someone is bending my ear with their illnesses. Now I am just very, very careful about what I eat and when I go out to lunch with the neighborhood group, I make sure we choose a restaurant that I can manuever in, without making a big deal about it.

In response to some of your present issues; the biopsy. Someone said there was pain, but I experienced absolutely nothing of the sort. You just don't eat for 12 hours before the test and no drinking a few hours before and then they give you an IV and lights out! I didn't even change out of my street clothes, only took my shoes off. When I woke up there wasn't any nausea, and I am prone to that, but no biggie, really. If you have damage to your villi, it can take 3-4 months to repair itself after going gluten free, and from what I am understanding, you have just gone gluten-free. If your GI knows what he/she is doing, your biopsy should be fine. But be well aware, the damage to your villi tends to be spotty and is all over the place and they may just choose the wrong spots to biopsy, so if it comes back negative by no means consider yourself to be free of Celiac. Your blood test and your gluten-free diet tells it all. I underwent the biopsy after 6 months gluten-free and it came back negative. But I only wanted it done to make sure I hadn't damaged myself to the point of cancer, so I was very happy with my results.

Acid reflux; I have it bad and it has not gone away since I went gluten-free. In some people, it does go away after going gluten-free, but I still have it big time. I take Aciphex twice a day to keep a handle on it and also take a probiotic and drink a couple ounces of George's Aloe Vera juice (the only one that isn't bitter or tastes like dirt) and my stomache is good. I can really tell if I back off of the probiotic and the aloe vera, so I make sure I don't miss them. Easy enough to manage. I think you will find that you can start to handle more foods as you get better. Seriously, try the probiotics and Georges. Are you taking any prescription for it? Don't try to avoid it, acid reflux can seriously hurt your esophagus and you could get cancer, so don't mess around with it.

I was diagnosed with Adult ADD about 8 years ago but have noticed appreciable improvement since going gluten-free and only take a Ritalin if I really need to pay attention to something or if my husband notices the piles of 'to do' projects all over the place and I am running around without a compass. My monthly scrip lasts almost 4 months now. I have also changed careers since then, from an intense sales job of high-tech devices to artist, so my ADD kind of fits in, so to speak.

As far as going gluten-free at home, it is just my husband and I and he gets a loaf of bread and everything else is gluten-free. I make my own breads and tried making my own noodles (pretty sad) but there are a ton of products out there to help. I buy the Pad Thai rice noodles for noodle dishes and we love them. It is a trick to get them just right, but after a few times, you'll have it. I am also becoming much keener in the kitchen since we hardly eat out anymore and find myself loving to cook, so there is a side benefit to this after all. There's a product called CHEBE that makes a great crunchy pizza crust, use 2 packages to make a cookie sheet pizza. I also add Fibersure and yeast to the mix, it doesn't affect the texture or taste and we can all used the fiber and the yeast is only for the flavor.

I buy most of my gluten-free food products from the Gluten Free Mall and find that the local grocers are stocking more gluten-free foods everyday. Just keep asking.

Best wishes on your health, keep us up on your progress. -

[Jim in Kentucky]

here is a web site near the Oakbroak area and it seems fairly current. Open Original Shared Link. A group used to meet in the Arlington Heights area, but I could not locate that website.

Don't be afraid of mentioning this disease to your friends and associates. I mentioned it to a golfing companion when we stopped for lunch and a friend of his was later tested for gluten issues - based on the discussion we had about gluten reaction. Spread the word.

[Gamecreature]

Thank you for sharing that, Sagemoon, I really should count my blessings!

I'm not concerned about the biopsy procedure - I figure it will be similar to the endoscopy I had earlier (when they were still trying to figure out what I had - shame the doctor didn't go a little further). I frankly don't remember a thing. At any rate, I feel for my wife who'll have to sit with me through the whole thing - I'm a lousy patient.

I wish I was still in the Northwest. I used to live in Eugene, where there was probably a health food store every other block! You just don't know what you've got 'til it's gone!

Thanks for the link, Jim. I think that's the same group as the Arlington Hts. one. I still haven't found out when or where they meet.

[emcmaster]

Hi there & welcome!

I'm a rather newbie myself - only 6 months gluten-free - but this forum has been a LIFESAVER for me. Do yourself a favor and spend as much time as you can reading as many posts as you can. The people on here are wonderful and are so knowledgeable.

It's going to take some time to recognize what makes you feel good and what bothers you. My best advice is to keep a food journal of every bite that enters your mouth, including medicines and any new personal care products you try. Most of us are that sensitive. I have successfully identified my problem foods/ingredients by keeping a very detailed diary. It's worth it.

For cooking, keeping it simple while you get things figured out is probably the best. Kinnikinnick makes great baked products and eating naturally gluten-free whole foods like veggies, fruit, meats, rice, potatoes and beans is always a safe bet. Once you get more adventurous, there are loads of great cookbooks out there - Bette Hagman & Carol Fenster are two of my favorites. I've had the best cooking success by simply substituting gluten-free ingredients for gluten-containing ingredients in old recipes. It's quite easy.

Welcome and feel free to PM me with any questions - I'll try my best to help!

Elizabeth

[IrishKelly]

Howdy gang,

I have recently been diagnosed with Celiac Disease (my bloodtest came back positive last week and I get to see the GI doc next week) so I still have a mountain of questions.

I wanted to find a support group in my area but have so far not had any luck tracking anyone down. Seems like there's plenty of people meeting miles from here, but none in this fairly well populated region - wonder what that says about the number of missed celiac disease diagnoses out here. But I digress.

I think I've got a good handle on the diet. I'm already feeling better. I had one accidental glutening and I certainly don't want to do that again. I'm still far from 100% (I'm achey and my belly feels like I've done 100 sit ups) but my head is clearer and the queeziness is nearly gone.

My main wonders are about how to cope - for instance, how do I break the news to folks, or should I even do it at all? This is all very new to me and I'm not really sure what the next step is.

I've got other questions, but those are the highlights. So let's trade some questions and answers.

Thanks!

Gamecreature

Male - 45

Chicagoland (Northwest Suburbs)

Hey there from one Chicagoland to another . How long have you been on the diet? It took me four months to see a huge improvement in my achy ness and horrible abdomial pains (just like you said about the aftermath of doing sit ups ). Hang in there...it will get better!

On another note, if you have loved ones in your life, whether it be family or friends, i have found that it has only helped to be honest with them (especially my in-laws), because these important people in your life will always have a hard time understanding why you feel a certain way, or act a certain way, or are eating certain things. You may also find this honesty towards them (regarding your gluten problem) as a huge stepping stone...sometimes you realize who actually cares