Another Newbie - I Think!

[Megsara]

Hi Everyone!

So, I have been having a bunch of different symptoms the last few months - stomach pains after I eat, bad bloating, feeling full for a lot longer than I should, increased thirst. I thought it was perhaps IBS, since I also have pretty bad acid reflux, though that I have had a lot longer. The doctor did a bunch of blood tests and one came back saying I have an anti-gliadin antigen (I think that's what it is called) which is suggestive of celiac. I have read some conflicting things about how definite it is that one has celiac disease when they test positive for this antigen. I am thinking that along with all my symptoms I probably do have it, but what else will they do to confirm? I have a follow up at a GI specialist on Jan. 4.

For now I am going to work with the idea that I do have celiac. For the first 24 hours I was feeling okay about it, since I was originally fearing something like stomach or intestinal cancer. But after doing research and reading everything that would be forbidden I started to get depressed. The nail in the coffin was realizing beers (except for gluten free) would be a no-no. Love beers, especially Guinness. I know there could be worse things, but.....

Some more questions....I've been having to get up at night almost every night recently to go to the bathroom. Is this common with celiacs who are still having some gluten in their diet? And feeling dehydrated on days when you have gluten though have tons of water?

I am sure I have about a million other questions, but that should do for now. Thanks for your help!

-Meghan

[RiceGuy]

Welcome to the board!

Well, your symptoms do suggest celiac to me. Though I didn't have all the same symptoms you describe, I would get extremely thirsty from even a small amount of wheat - like a bit of bread for example. Drinking tons of water just didn't help either. Since the range of symptoms is so vast from person to person, your best diagnosis would be to try going gluten-free and see how you feel. This is considered by the majority to be the most accurate means of a clear diagnosis. However, the length of time it will take for symptoms to diminish/disappear also varies quite a bit from one individual to the next, so you may have to wait longer than you'd prefer. Some folks see a definite difference overnight, while others see little or no change for weeks or even months. My personal experience is that some symptoms disappeared in a matter of a few days, and others took several months. The thirst was really an obvious one, and one of my main clues that wheat/gluten was a likely culprit. Over time I've noticed little things that I didn't even think were signs of any particular issue actually clear up for the first time. Many of them I have always had and just came to regard as part of life.

As for your apprehension at the idea of having to give up some things you really like, I would point out that many times it is a chemical addiction that makes a person feel that way, and not that the food is actually so enjoyable to them. For example, I dreaded the thought of having to give up pasta. It was (so I thought) one of my most favorite foods. However, now that I no longer have gluten running through my veins, I could care less about pasta. Even though there is a great rice pasta available (Tinkyada brand), I seldom have it, and when I do there are no bells ringing nor angels with harps. It's just pasta, though it is indeed every bit as good (and then some) as any wheat pasta I've ever had. And I always sought the highest quality durham semolina pasta I could get. It was this experience which made me realize that my intense desire for pasta had been other than the good taste. I believe you will find the same to be true for the no-no's you currently treasure once you get gluten out of your system.

I'm sure the the general consensus among the members here will be to try the gluten-free diet. You can depend on this board and the many helpful and knowledgeable folks who participate to guide and assist you in finding your way through those tough early days. As your symptoms fade, your determination will grow, and you will find it easier than you now perceive. Also keep in mind that most folks start out with a very narrow diet, and going gluten-free brings in such a wealth of new food choices, you'll soon realize how truly limited you were, and how much more variety you'd been missing out on all along.

I really hope you obtain the good health you seek and deserve.

[Guhlia]

Hi Everyone!

So, I have been having a bunch of different symptoms the last few months - stomach pains after I eat, bad bloating, feeling full for a lot longer than I should, increased thirst. I thought it was perhaps IBS, since I also have pretty bad acid reflux, though that I have had a lot longer. The doctor did a bunch of blood tests and one came back saying I have an anti-gliadin antigen (I think that's what it is called) which is suggestive of celiac. I have read some conflicting things about how definite it is that one has celiac disease when they test positive for this antigen. I am thinking that along with all my symptoms I probably do have it, but what else will they do to confirm? I have a follow up at a GI specialist on Jan. 4.

For now I am going to work with the idea that I do have celiac. For the first 24 hours I was feeling okay about it, since I was originally fearing something like stomach or intestinal cancer. But after doing research and reading everything that would be forbidden I started to get depressed. The nail in the coffin was realizing beers (except for gluten free) would be a no-no. Love beers, especially Guinness. I know there could be worse things, but.....

Some more questions....I've been having to get up at night almost every night recently to go to the bathroom. Is this common with celiacs who are still having some gluten in their diet? And feeling dehydrated on days when you have gluten though have tons of water?

I am sure I have about a million other questions, but that should do for now. Thanks for your help!

-Meghan

Riceguy makes a great point about the addictive nature of gluten. I'm sure someone else will get into the discussion of it's similarity to opiates. It's hard to "quit" gluten and the first few weeks can be pretty tough if you get withdrawal symptoms (I did). That being said, once you make it past the first few weeks it is all downhill from there. It gets much, much, much, much easier as time goes on. I don't even realize anymore that I'm eating a "special" diet. It just seems normal to me, my family, and my friends. I eat everything they do, mine just looks and tastes better than theirs.

When you get up to go to the bathroom, are you just urinating or are you having frequent bowel movements? If you're urinating it could be due to stress or mineral deficiencies OR it could be due to a problem thyroid problem. Thyroid issues are pretty common in Celiacs. If you're having frequent bowel movements I would assume that this is due to Celiac Disease.

As for beers, there are some REALLY good gluten free beers out now. Bard's Tale, New Grist, Red Bridge, and Ramapo Valley's Honey lager are all gluten free. Red Bridge is actually made by Anheiser-Busch so it should be nationally available very soon. They're in the process of rolling it out right now.

[Sophiekins]

Meghan,

Please, please, please do NOT go gluten-free until you see your GI - if you want a medical diagnosis. When you see the GI, he or she will take a medical history focussing on your digestive function and use this in conjunction with your bloodwork and his or her physical exam to determine whether you are a candidate for biopsy. If you are a candidate for biopsy, this means that your Dr feels that you may be a borderline case, or would like more information before making a definite diagnosis. The biopsy is a relatively simple procedure (mostly painless), and the full diagnosis would involve two or three - one before you go gluten-free, one after six months gluten-free, and one after a year gluten-free. If you go gluten-free before your GI appointment, your Dr cannot make a full diagnosis if, as it seems from your description, your numbers are not high enough to be conclusive on their own.

If you do end up going gluten-free, try not to focus on the "forbidden" foods - there are thousands and thousands of foods which are naturally gluten-free and very tasty. Try googling Gluten Free Girl (it is a food blog written by a celiac foodie, and it's enough to make your mouth water. . .sorry I don't have the exact URL). Instead of saying stuff is dangerous, my family instead focus on foods that are "Sophie-friendly" - looking at it from a positive angle will help, as will feeling better. You probably can't imagine at this point how great you are capable of feeling gluten-free - I know I couldn't. When you go gluten-free, it may also help to get together some friends and go out for one last dinner to celebrate the start of feeling good - have one last Guinness and savour it, and then, remembering that flavour, move on to new and different ones.

Good luck!