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My Celiac Story
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9 posts in this topic

I hope this is the right forum to post this in, but I thought I would join and I'd like to share my Celiac story..

Celiac, or not Celiac. that is my question. and it is a question that will never be clearly answered. It IS depressing to know the only proof I have of having celiac disease is my own physical diagnosis...simply a trial of seeing what symptoms I suffer from actually match up to those of celiac disease..

I never will forget the day I became ill, or at least noticably ill. I remember about 4 years ago going back to school after lunch with a stomach ache frequently, always just assuming I had either ate too much or too quickly..

Last New Years day I had half a styrofoam glass of Clamato juice because I was thirsty and everything else was put away on the way home. I know that being allergic to tomatoes always caused me to have cramps that would go away in a day. But this time they didnt..

After 5 days of sever pain I went to the doctor. Between the day I got ill and mid February 2003(When I started the diet) I went through countless bloodtests, an ultrasound, and a barium xray. Everything came back negative. I was in the doctors office at least twice a month last year, so by the end of the year they quit asking me who was calling. Because SK has the longest waiting lists, I never had my Endoscopy til March 9th and my Colonoscopy May 26th...2004 <_< ...Because of the length of time on the gluten-free diet both came back negative. My family doctor suggested this July, when I received my colonoscopy results, to join the main association. And also said the only way to actually prove having celiac disease is to go off the diet for at least a year and retake the tests...I refuse..

Unless you are in my situation, I believe it is impossible to know what I'm going through...

~Being 20 years old

~Losing 20 lbs in the first month of being sick

~Starving or suffering at all family gatherings because of VERY little support..I've actually begun to skip out on events(only to be yelled at) or taking my own food(only to be glared at)

~Suffering from the majority of symptoms even when sticking to diet

~The extreme difficulty of going out with friends

~Spending an average $100 a month just to feed myself, when I'd rather be saving up the money so I could go to Uni.

~Nobody understanding what celiac disease is even after I explain

~Going from a size 12 waist to the size 5 I am at now, and being annoying at MANY people telling me how pale and tiny I am. And trust me, for a 5' 6 1/2" tall person, size 5 IS tiny.

So now you know my Celiac story. I am sure I am not the only one going through something like this, but I can tell you this is not how I ever imagined spending my life at my age...

~lisa~

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:( i feel for you lisa and it does sound like celiacs--i was never dr. diagnosed either, i was always told it was IBS and eventually decided it was in my head, that i must be crazy or something--if you have been gluten free for this long and still feeling ill, then i think you are getting gluten somewhere that you have discovered yet or maybe there is another allergy showing its ugly head too--many celiacs have more then one allergen, many have many--keep your chin up--deb :rolleyes:
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I'm sorry to hear you're getting no support from your family. I've never understood this, but I've always gotten nearly complete support.

If you're absolutely sure you've eliminated all sources of gluten and you're still having symptoms, then something else is going on as well. Two things that come to mind are other food intolerances (dairy, corn) or the possibility of bacterial overgrowth. You can usually take care of the second simply by taking probiotics.

Finally, if you have the facilities to cook for yourself this way of eating does not have to be expensive. I spend less now because I don't eat out as much. But I also don't buy those expensive gluten-free specialty foods. I bascially cook with raw meats and fresh fruits and vegetables (not that I don't use any canned or processed goods -- I do).

richard

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I think you'll find a lot of people who are in or have gone through the same exact situation you are now in.

Sorry to hear that your life isn't the way you want it. I know I didn't expect to be 19 and so different form those around me. But after 2 years I have found that I can do a lot of things that my peers do when I am not sick. It took me awhile to fully be symptom free but once youre there everything is so much better.

I get very depressed over my Celiacs often and it is such a pain and the copst and everything you listed. In the end I know that this life is better than a life filled with wheat and I better try to find the postive. The food is way too expensive but some of it does taste good. Ha.

Anyways, I hope this forum offers you a lot of help AND support!

Kristina

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Thanks guys, I have a feeling there will be a lot more support here than I will find out there in person.

And what I meant by still having all the symptoms even when I stick to the diet, I meant that I dont feel the pain from eating gluten, but I suffer from pretty much everything else. Its a real pain and I know I get really depressed too sometimes..

At least I have all of you :)

~lisa~

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Hi Lisa,

Welcome to the forum and you will receive much support from us, as I have since I have joined.... It is incredibly reassuring just having someone who can empathize with your situation, especially considering the fact that you are lacking the support of your family, which never ceases to amaze me.....

Many of us are still suffering symptoms of Celiac even though a gluten free diet is being followed. That's what is so helpful, not only having other people in your situation so you don't feel so alone, but also, there are "gluten sleuthers" here who can help you pick out hidden sources of gluten (which there always are).

Have a great day!

Karen

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Oh, and I forgot to mention,

I am the Number One Leafs Fan!!!!! Go Leafs Go!! (That is when they get around to playing again!!!!)

Karen

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"I am the Number One Leafs Fan!!!!! Go Leafs Go!! (That is when they get around to playing again!!!!)"

IF they get around to playing again. There's some speculation that this strike could kill off the NHL.

richard

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Hi I am 20 too and I know how you feel. I totally know. I went to school in NYC and had to come back, I spent $1000 USD on food alone in one month. Oh man if you wanna talk, I have a similar experience with the medicined aspect. I am extremely reactive to gluten and can't get a diagnosis (loove canada) and therefore can't get better. My parents friend is a doctor and he says it might be in the middle of the small bowel and only the camera pill can find the damage. Mybe that is why i have constipation and not diarrhea.

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    • Hi Lisa, I completely understand why you didn't do a biopsy on your daughter.  I went through the appendix thing myself...not fun!  I was diagnosed with just bloodwork and no biopsy, but did have the full panel.  I would go back to your PCP and ask for a full panel to include TTG, EMA and DGP tests.  Since she was already willing to test you, I'm sure she would be willing to order these.  Good luck!
    • katesyl.........this is an older topic so the OP most likely won't answer.  I can, however, offer a piece of advice for you. Just going gluten free will probably not drive your inflammation markers down into normal.  It does depend on how high they were to begin with but with all autoimmune diseases, there will be inflammation going on forever.  Get used to wonky blood work because most of us will have that issue. I have 4 autoimmune diseases in total and, although I have driven certain inflammatory markers way down, my recent sed rate number was elevated.  The normal is supposed to be 30 and under in a woman my age but mine is 50.  With 4 AI diseases, I doubt it will ever be normal and I don't let it bother me. I am not willing to take major meds at all and use more natural anti-inflammatory supplements.  You can do whatever you feel comfortable with in regards to treatment but don't expect normal numbers with Celiac Disease. Inflammation will improve but normal?  Most people never get there completely.
    • My daughter's PCP did not go against anything, she offered to do the biopsy - I was the one opposed to it. My DD, who was 10 at the time had just spent 3 weeks in the hospital, very sick with a ruptured appendix, then had 2 surgeries a few months after. I didn't see the need to put her through anything else with her numbers so high and all the classic symptoms. Apparently, in some other countries, if your numbers are all high, they forego biopsy. Anyway, I was really asking about myself and whether I should push for add'l testing. I am still new this this and trying to get up-to-date and wasn't sure if my PCP should conduct other blood tests before I go completely gluten-free. I have been somewhat gluten-free, but not entirely. I have no problem going gluten-free, but want to make sure that I am doing it for the right reasons. I wasn't sure if the Gliadin Abs IgA was sufficient to point to Celiac and possibly doing a biopsy for me. Or if additional blood test would make more sense.   Thanks!!
    • I would like to know if you have found out the source of your inflammation yet. I'm gluten free three years but my inflammation test was high.
    • Personally, I would ask for the full Celiac panel and see what that shows.  I mean, the full Monty, not just cherry picking testing.  On the full panel, if the tTg and the EMA come back positive, that is a diagnosis without biopsy.  This is how I was diagnosed and there is absolutely no doubt I have Celiac.  I presented with classic celiac so it was a no brainer with my blood results. If you cannot stick to the diet religiously, without cheating, unless you have a biopsy picture, then I would go on to have a biopsy.  Like your daughter, I was way too sick to have one done at the time.  They would not have agreed to use sedation because I was so anemic and malnourished and that ended that!  Good luck with whatever you decide!
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