New At This...lots Of Questions!

[anerissara]

Hi, everyone! I am so glad to have found this place. I have a bunch of questions....

First of all, has anyone here NOT lost a lot of weight before being dx'ed with celiac disease? My MD said that I couldn't have celiac because I've never lost 15 or more pounds for "no reason". But while I've never lost a lot of weight w/o good reason, I also am not overweight (never have been although I was underweight as a teen) and I have just about every other symptom of celiac except for the weight loss. I get a rash that I suspect is dh, with little blisters that leave pits behind and very dry, cracked skin. I've thought for years it was just IBS but in the last year I've just been feeling so crummy, tired all the time and fighting depression etc. etc. I decided to go off gluten anyway and Wow! I felt so much better in just a week's time! I can't believe how much more energy I have, and I even seem to be thinking more clearly! I've been gluten-free for about a month and it's so much better, although I'm still struggling trying to figure out what not to eat and have messed up quite often. I'm trying hard to find hidden gluten and get rid of it but it's not easy!

Some more questions for you guys who've BTDT...

How long does it take for things to improve once you're on the diet? I feel much better but still have diarrhea. It seems to be getting better but it's not all the way better.

How long after you accidentally eat gluten do you notice a problem? How long does the reaction last? And what symptoms happen when you ingest gluten? I was doing pretty well but ate a can of chilli w/o reading the label. Oops! That was Monday, and it seemed to be the worst yestorday and today. Is this normal, or did I get something else that set it off as well?

Just out of curiosity, do any of you have white spots on your fingernails? I had them on just about every nail but the new growth seems not to have them, so maybe it's connected to celiac disease?

Finally, when I had bloating and cramping my mid/upper right tummy felt the worst, sort of where a duadnal (ugh, spelled that entirely wrong) ulser would be. It's gone away in the last month, do you think that would be related?

Sorry about all the questions....I am going to have to find a doctor who knows more about this and can actually help me but it's good to have a place to ask until then! I am really starting to think I'm on the right track with this, everything (except the weight loss) matches up and I feel so much better with out the gluten!

Thanks!

[Guest PastorDave]

Hi there. About the sudden weight loss. If I ever lost 15 pounds rapidly, I would have been hospitalized! I am too thin to be loosing that kind of weight. I think one of the biggest problems with Celiac in the US (I mean besides the production and sales of rice bread that looks like plastic) is the fact that it has not been recognized as common in adults until recently. As a result, many doctors don't really have a clue. My wife (a nurse who loves to learn about different diseases, so when I was diagnosed found out as much as she could) wants me to find a new doctor because mine doesn't see a problem with "cheating" on the diet.

Something else my wife has found out about celiac is that the symptoms are not the same with everyone. I was diagnosed early in the progression (it is hereditary and when my Mom was diagnosed my wife encouraged me to be tested) so I don't show many symptoms at all. It is interesting though that now that I am gluten-free I have had worse reactions to gluten then when I ate it all the time. My body is enjoying the fact that I am gluten-free so much that it really complains when I subject it to the dreaded gluten.

Remember that whatever your doctor says, you are not the same as everyone else, and you will not have the same symptoms as everyone else. Go find a doctor that will agree with this and you should have some luck.

One last word of advice, if you haven't been diagnosed yet, find a good doctor and go off the diet for a while. Your body is repairing itself as you are on the diet (if it is indeed celiac) and you might get a bad diagnosis if you are gluten free before the testing is done. I know you don't want to feel bad, but you also want to know for sure if gluten is your problem, and not something else used most often with gluten foods. It is a temptation to diagnose ourselves, but we can't look inside ourselves to see what is going on, but the doctors often can.

[billfl]

I lost about 10 lbs after I started on a gluten-free regimen. Strangely, during the two years when I was suffering from really bad "D", I did not lose weight. I believe that most of the loss was fat. Re self diagnosis....I didn't use to believe that this was a good idea, but during my two years of " living in the bathroom", I sought help from four doctor specialists, in addition to a GP, and none of them even came close to identifying celiac disease as my problem, and all of them were aware of my symptoms which were classic celiac disease markers. Finally, I spent no more than 30 minutes on the web and fortunately reading sites such as this one, and self diagnosed. After going gluten-free, I started to get immediate relief. The thing that concerns me is the wrong diagnosis that were made and the unnecessary tests and medications that were prescribed, leading to more medications to counter the side effects of medications. Again, I would like to express my thanks to the people that contribute to this site and provide help that is otherwise not available.

[KaitiUSA]

Weight loss only occurs in some people.Some people lose weight some people gain it. I for one lost weight but gained it back after going gluten-free. Some people have celiac and don't even have symptoms.

I usually notice if I have something I shouldn't right away. The 7th day is usually the worst day though and then I start getting better. People have different reactions to gluten though...symptoms and how bad of a reaction depends on the person.

Some people notice they feel better days after they go on the diet...for others it takes longer.

I suggest you find a doctor who specializes or is knowledgable in Celiac disease. Good luck and hope you feel better

[celiac3270]

There are no set symptoms with celiac. You could feel absolutely normal having never lost or gained anymore weight than what is normal with no gastric symptoms and still have it--this is precisely why 1/133 (or even more than 1/133) have celiac and yet so few know about it. Doctors don't think to test for it, especially when there isn't a problem with the patient.

I have those white spots under my fingernails--I think they're calcium deposits or something--not sure if there's any relation.

Gluten reactions are different for everyone and can vary greatly. Some people take only about 15 minutes to feel sick, but you can take a couple days. Also, sometimes reactions and timing fluctuates based on the product. How long you're sick after consuming gluten is also a personal thing--it can take weeks for some, a few days for another.

Healing time can range dramatically, as well. Though your intestines won't heal in this time, your symptoms can disappear in a few weeks or take over a year. Generally, it takes a few months, I think.

Welcome to the board

-celiac3270

[catfish]

Regarding the white spots on fingernails, I have heard that these are the result of physical trauma to the cuticle during fingernail formation. This "trauma" need not be anything severe, just a little whack of the fingers against a wall for instance, something that you'd just shrug off and think nothing of. I have heard though that they can also be caused by other sorts of "trauma" such as illness or a dietary insufficiency or something like that while the nail is formaing. So in effect, they can probably be caused by lots of different things and it might be hard to find out exactly what caused yours.

[mscriber]

White spots on fingernails do indicate a calcium deficiency. I read about this recently. Plus, my sister has Bartter's Syndrome and has to be careful. She told me something about that years ago.

[anerissara]

Thanks, guys! A calcium deficiency...ugh, I'd definately better find a dr. who knows more about this because the last thing I need is a calcium problem! Yipes!

Thanks.

[mscriber]

Keep in mind it could be a minor one, but taking a calcium chew or tums?? something gluten-free would probably be sufficient. Do you take a gluten-free vitamin? Is it major whiteness or just a little white spot?

[anerissara]

Not major white spots, it's just that every one of my nails has at least one and sometimes more little white spots on them. I do notice that as they are growing there don't seem to be any new spots close to the nail bed, so maybe the gluten-free diet has something to do with it? I should probably find out about the calcum, though, because for a long time I was lactose intolerent and didn't eat milk products. I've tried to be consistant w/ suppliments, but I guess they don't work as well as the real thing. One major plus with the gluten-free diet is that now I seem to be able to tolerate lacose! I still wouldn't drink a glass of milk, but cheese and yoghurt seem to be fine. Yea!

[mscriber]

I would definitley get something if it's on all your fingers. Talk to your dr. unless you know of something you can tolerate. One little spot or even two might not be a biggie...just be safe!!! Call and tell the nurse at your Drs. office and let them make the call about what to do. They'll say whether or not you need to come in or if they can recommend something.

[tarnalberry]

I didn't lose a lot of weight before my diagnosis. If you check out the NIH's summary of their conference last year, you'll see that they note that extreme or sudden weight loss is NOT present in all cases.

[Sada]

Hi

I am new here too! I have been diagnosed with celiac disease and been on a gluten-free diet for 1 year. I was heavier before diagnosis also.

Sada

[celiac3270]

Yes--I heard it was something to do with calcium, also. I just heard something like...calcium deposits, but I bet you're right. Calcium....ya, I bet I'm lacking in it. I get very little--don't drink milk--used to drink calcium-fortified OJ, but stopped because of the acidity. I'll see what I can do about that. I don't think my nails are getting traumatized, but I bet it's a calcium defficiency

[anerissara]

Thank you for the referal to the NIH report, I will print that out and take it with me next time I see my MD! I think that he will be more likely to listen to me if I come backed with evidence. I also think I remember being dx'd with DH (by a different doctor) 3 years ago, although celiac disease wasn't mentioned at the time. I am going to call and get records for that too. I'm still not sure I am ready to go back on gluten to get the testing done, the thought just makes me sick...but maybe it would be worth it in the long run? I dunno, I don't plan to ever go back to gluten at this point--even if all testing said negative, I feel so much better that there must be *something* to it!

[KaitiUSA]

Definately...listen to your body if something is right with that then go with it...maybe you need to inform your doctor about celiac instead of him falsely informing you

Good luck with everything

[rmmadden]

I was diagnosed recently and have been gluten-free for 2-months. Before that I had severe weight loss (20-pounds in 7-weeks). That was pretty much the clue my doctor needed to test me for celiac disease (positive Endoscopy and positive blood work).

I notice a gluten reaction within a short time after eating. I also get the bloating and the Big "D" as well. I have been feeling better here the past 2-weeks and I hope it is a sign that I am slowly healing .

Hang in There & Good Luck!

Cleveland Bob