New Here.... And A Question!

[Camy]

Hello everyone,

my name is Camy, I am 23 years old and have gone gluten free 21 days ago. For the first time in years I feel "normal".

My story is the following: I had a "tummy-bug" when I was 14, which lasted the usual 2 days and then I felt better (like my whole family), but after about a day of feeling better I started getting nauseous every day. I threw up every day for months and had diarrhoea often, and was brought from one doc to the next, the diagnosis were: prolonged stomach bug, possible bulimia, probably psychological issues.

My parents were happy with this, they were sure it would resolve itself. I eventually stopped throwing up and settled for almost daily diarrhoea. I also started to put on weight (which is in itself strange when you are constantly sick). At 17 I was diagnosed with IBS, had my "flora" sanitised with some pre-probiotic stuff and felt a bit better. The diarrhoea continued. I asked my docs if it couldn't be celiac disease and they said no, I was "too fat" to have celiac disease. Other things I felt were strange but nobody else thought as "symptoms" were hairloss, hugely bloated tummy and a lot of, often painful, wind, sadness (maybe depression), bones that broke easily and an inactive thyroid.

At 20 I was diagnosed with "symptomatic Crohn's disease" even though my colonoscopy was clear and given some medicines that did little to help me.

I was still feeling nauseous and having diarrhoea daily, I was not enjoying myself in anything I did because the nausea was casting a shadow over everything. I was always looking for the closest bathroom, I would get panicky whenever someone was stomach sick, because I was afraid of catching it and when the nausea got really bad I would start shaking and crying and just have total panic attacks.

In october 2007 (mind you my odyssey started in 1999) the mom of a celiac girl and I got to talk (her girl is my brother's friend) and after I told her some of my symptoms she said: I am positive you have celiac disease!

My gastro said I should try to go gluten free, but he was still positive that I had Crohn's.

Well, I feel wonderful and cannot believe no one told me about this earlier (and that I didn't realize it myself!!)! My 7 months pregnant looking belly has deflated and looks normal, my face has swollen down, I have a neck again. My tummy doesn't hurt, the nausea is gone! For the first time in 8 years I do not have daily nausea and diarrhoea!!

Now my question is, as I have "self-diagnosed", how do I tell this to my doctors? I mean I am not going to eat gluten again, not for the testing or for anything else, so I will not have the proper testing done. I think the result speaks for itself.

But when I go to my normal doc, shall I just say I self-diagnosed? Nobody takes you for full if you say that (at least not in medical circles, I am a medic myself and I know!).

What do other self diagnosed people do? I think my dr.s should know about this.

Thank you, I am so happy so have found a support group and to finally know where I am at! Camy

[HAK1031]

Welcome to the club I'm glad you found your answer

Make an appointment with your GI and tell him about your incredible success with the diet. If he knows what he is talking about, he should at least diagnose you as "probable celiac" (this is what mine did-- I was already gluten-free as well so testing didn't mean anything). You can also have the genetics test done, which can see is you are predisposed to celiac, though 35% of the population has at least one of the celiac genes so it's not a rock-solid diagnosis. But if your GI agrees, then mention to your PCP about your success and say that "My GI and I highly suspect that I have celiac, but we feel going back on gluten testing would compromise my health too much, so we are opting for me to stay gluten free". If your GI or your PCP are being difficult, I say find new ones

[Darn210]

Tell them that by doing a little research on your own, you thought it was worth trying a gluten-free diet and your symptoms have improved/dissappeared. It's not like they can make you eat gluten. They don't have to like it . . . however, their reaction may determine if you want to stay with them or not. Hopefully, they will be willing to listen to your success.

And I do think you are right . . . your doctors should know so that the next time they see someone with symptoms that don't improve, they might consider that the patient needs to try removing gluten.

[scotty]

well i should jump in here and say wooooah nelly---

be prepared for the worst year of your life which will be the best year of your life (so far)

i am self diagnosed with the help of the internet here. i need to find docs for everything and am totally terrified of getting anything else--like, say i need some dental work; well, how long will that mess me up and how many trial runs do i take til i get the right medications and whatnots to have successful visits all around. you seem to be on better track than myself. i would suggest confronting your docs and if they give you funny looks or try to prescribe something that will alter your bowels in a way they think is quite necessary then drop them immediately. it seems you already have been steered in the wrong direction once too many times. many of us have.

moreover, i tend to rely on my body; if it reacts negatively to something then i cut it out. i dont take pills i dont take supplements i only put natural organic foods in my belly. occasionally i eat hersheys kisses and have a awful week after two minutes of bliss. in that i am self-diagnosed i have to stick to that route and take the advices and the considerations as a grain of salt cuz sometimes overwhelming your system with too many "cures" can be the problem in itself. but i think you already know that.

your youth sounds like mine--good luck

[Ursa Major]

Hi Camy, and welcome to these boards. You've had some rough years, I am glad you figured out what the problem is.

Yes, you should tell your doctors that you finally figured out that gluten is causing you to be ill. And that you have no intentions whatsoever of eating gluten again, not for any testing or any other reason. Because you like feeling well!

Putting on weight when you are always ill sounds familiar. I did that. It seemed that the less I ate, the more I gained, and when I had chronic watery diarrhea for six months in 2005, I gained weight! My doctor didn't test for celiac disease because I wasn't losing weight.

My naturopathic doctor (who I found last year) was astonished at such ignorance. He asked me, "Doesn't your doctor know that unexplained weight gain can be a symptom of malnourishment?" Well, apparently not.

[lizard00]

Welcome Camy!

He told you to try gluten-free, so go back and tell him your amazing results. Your nondistended abdomen should be sign enough not to question you. You may be able to still do an endo, if you want. It's pretty unlikely that you have completely healed already.

Either way, you found your answer. There's a lot of self-diagnosed... myself included. My GI thought I did the Atkins diet to lose weight... I told him to try again. I was having an adverse reaction to a Rx, which I took myself off of. Gluten intolerance definitely runs in my family, and when he finally heard that he listened. My point is, if you feel human again, you have found something. Listen to your body! When it comes to your health, I truly believe that most people know what's going on.

All the best!

Liz

quote name='Ursa Major' post='387507' date='Jan 21 2008, 09:40 AM']Putting on weight when you are always ill sounds familiar. I did that. It seemed that the less I ate, the more I gained, and when I had chronic watery diarrhea for six months in 2005, I gained weight! My doctor didn't test for celiac disease because I wasn't losing weight.

[Ursa Major]

Ursula,

Could you tell me where to find something like that to show someone? My cousin, who is also Ursula (great name!) eats incredible healthy, exercises way more than I do but she CANNOT lose weight and she stays discouraged about it. I recommended she be tested for Celiac because she cannot tolerate wheat/gluten well either, and she said that she didn't think she had it because she wasn't "skinny". I told her that unexplained weight gain can be a symptom, but she didn't think so. I am not big, but I needed to lose 10 or 15 lbs. But I could never get past a certain point. I ran 3Xs week, worked out the other 3 days, and watched what I ate like crazy. As soon as I cut gluten, I lost the rest of the weight I wanted to lose.

Her tests were like mine though, negative. She doesn't eat a lot of breads or pastas, so I didn't think hers would be conclusive either. But I'm not sure she's too ridiculous about reading labels. She also cannot tolerate dairy or soy and she has a thyroid problem. That's a few too many signs to me...

Thanks in advance for any direction/info you can send my way.

Liz

Liz, there is lots of evidence that celiac disease can cause weight gain. Some scientists estimate that at least 40% of people with celiac disease gain weight, rather than losing it. Of course, those are the people that are even more underdiagnosed than the ones that lose weight.

The following is a paragraph taken from an article (I will provide the link to the full article beneath it).

Under normal nutritional conditions humans only absorb about 80 percent of the nutrients from the food they eat, and the rest of the nutrients pass through the body4. With celiac disease, however, the body is unable to absorb the necessary nutrients, which causes some peoples bodies to become a super-efficient machine that begins storing as much fat as possible in order to survive. This nutrient deficiency convinces the body that it is starving to death, which sends it into starvation-mode. Since humans need a certain percentage of body fat reserves to stay alive

[lizard00]

Gotta love this forum!!!!

Thanks a bunch!

[Adelle]

I had unexplained weight gain too! About 80 lbs in 1 year. The last 8+ months (before I self dxed) I was sick, I couldn't walk (Ataxia), kept shaking, dxed with narcolepsy, borderline personality disorder, and I kept gaining weight! Was eating less than 700 calories/day and still creeping up! My doctors kept giving my psych drugs, sleep drugs, all kinds of drugs.

When I went gluten-free, I could walk (a few steps, but still!) unaided for the first time in about a year. Everything got better SO fast. A week into going gluten-free, my doc consented to do a blood test which came up "mildly positive", but insisted that "it isn't enough to warrant such a radical diet". I ditched that doc asap!!

I found a new doc and I put it like this, "I feel SO much better, if you offered to pay me $100,000 to eat a piece of bread, I wouldn't take it!! If you try to give me a medication that isn't safe (and yes I always call the manufacturer to check) I won't take it". Guess what? He took me seriously! It's in my file, CELIAC DISEASE in huge bold letters!!

Congrats on listening to your body, and here's hoping that things will just get better and better!