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Sick, Weak, Thin, And Ready For Answers

imsohungry

By imsohungry
in Coping with Celiac Disease

Recommended Posts

imsohungry Collaborator
imsohungry
Posted

Hi all,

I am trying this diet again. I'm having D 5-10 times a day, my BP is low, I'm weak, and I've lost at least six pounds recently (at 5'8" I weighed 122 lbs. at the gastro.'s office). I took a list of all my symptoms (I won't list here) to my gastro. Anyway, he said, "You have IBS...I'll put you on X drug, and you take it everyday...up to 8 pills a day." I'm not happy with such a vague dx. and life-long pills to take.

I asked him for another colonoscopy (I haven't had one in years), and he reluctantly agreed. I questioned him on what he thought was irritating my bowel. He responded, "Anything can." What a waste of my co-pay! LOL. I knew coming into his office that my bowels were irritated...all he did was add the word "syndrome!"

This Wedn. is my colonoscopy, and if it is "normal," regardless of what he says...I'm starting my gluten-free diet again. The worst thing that can happen is that the D stops, and I feel alive again. I'm to the point where I'm in bed constantly b/c I'm so weak.

My question is this: I would like the name of a VERY GOOD, CLEAR, and ACCURATE book on living gluten-free. I don't need recipes...I have several great gluten-free cookbooks. Can anyone recommend a book for me? I am hesitant to blindly order because it's important that the info. be accurate and clear.

Thank you so much!!!

Julie :)

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lamegirl Newbie
lamegirl
Posted

First - a colonoscopy is not going to give you a diagnosis - you need a small bowel biopsy which goes from the *other* end, so you probably won't find any diagnosis from this procedure at all.

Second - Get another doctor, or see what other options are there... check out "rate my doctor" online - you might find a sympathetic one in your area.

Third - living gluten-free a book/ I don't know that there is a huge "gluten-free" lifestyle - it is mainly preparing foods and sticking to the diet and it is about 99% preparation I figure - like making sure there is food that is gluten free if I'm at work, or at a party, etc. I think that is where I tend to go to recipe books for - just more ideas on how to make foods easier. But I would strongly recommend connecting up with a local celiac chapter too - they would have resources there - hopefully close to free- and also they'd have people there that might be able to recommend different doctors in your area to help with a diagnosis.

Of course I read your post and I think - well I wonder if it is something more serious - like crohn's or colitis - in which case you should stick with the medical community until you come up with a diagnosis one way or another. I know it is a pain - I've been in a great deal of pain since I left home when I was 17 - we were a wheat-free household, and of course we didn't put 2 and 2 together, but my dad had a wheat allergy so the food we ate was pretty much gluten free as well... and when I moved out, I started eating gluten. Well, 15 years later, countless doctor's visits for depression, gut aches, weight gain, etc and I have a doctor that believed me... and I finally got a diagnosis. But I'm glad I stuck with it, because I kept going back and forth allowing or not allowing myself to eat gluten.

Katie B Apprentice
Katie B
Posted

"Gluten-Free Diet" by Shelley Case is a comprehensive book about what you can/cannot eat. She even breaks down the nutritional values of various flours and provides names of gluten-free companies in the states (some in Canada).

I found it invaluable.

rdunbar Explorer
rdunbar
Posted

Sorry you are feeling so bad; I know how it is, and the weight loss can be alarming, I know, I lost 25 lb at one point, and that was starting at 155!

Its horribly frustating when thier diagnosis turns out to be a fancy way of saying " I don't know what it is, so let's put a generic label on it so it looks like I know what I'm doing"

as far as books, ' Celiac Disease, the Hidden Epidemic' by Dr Peter Green , which has a section about the diet, and covers topics like cross contamination,and

' the Gluten Effect' by Drs Petersen, which has a lot of good scientific info, this book really helped me to understand how so many different health problems I've had were interrelated. It also has some stuff about diagnosis,supplementing, vitimin defeciencies, and what you can and can't eat. Worth reading.

GlutenCanKissMyButt Newbie
GlutenCanKissMyButt
Posted

I would recommend checking for these books at your local libraries if you don't want to waste the money. I just found Celiac Disease: a hidden epidemic at my library and many, many other books on celiac disease, not just about the diet.

cyberprof Enthusiast
cyberprof
Posted

Dr. Green's book is good but for a guide:

"Living Gluten Free for Dummies" is the best I've read for a primer. You can get a copy for about $13 or borrow from your public library.

The other posters are right...a colonoscopy won't diagnose celiac, only an endoscopy can do that (assuming you're still eating enough gluten and have enough damage to find).

Good luck.

txplowgirl Enthusiast
txplowgirl
Posted

I agree on the "Living Gluten Free for Dummies". Of all the books I have read this one is my favorite. Very concise and clear cut.

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cassP Contributor
cassP
Posted

you need to get a better doctor- and get properly tested for Celiac NOW- i mean now- because i think you should get back on the gluten for a more accurated test- and then as soon as the test is done, go off it.

unless you're fine with no diagnosis-> then get your book, and go gluten free now....

i had a client who was on and off prednisone for a decade for her "IBS/Crohns?"... i suggested to her she ask her GI for a Celiac test... she did, and got her results- she DID in fact have Celiac... she had been on steroids for years and also couldnt get pregnant- so annoying how dismissive our docs are!!!

psawyer Proficient
psawyer
Posted

Since you want an accurate source, I recommend you avoid The G-Free Diet: A Gluten-free Survival Guide by Elisabeth Hasselbeck. ;)

Shelley Case is an excellent source of practical information about the diet.

missy'smom Collaborator
missy'smom
Posted

I've found through allergy testing and an elimination/challenge diet that the things I tested pos. to give me IBS like symptoms, in addition to some classic allergic symptoms with a few. My allergist is up on current celiac disease protocol for testing and believes in eliminating foods even if they don't produce anaphylaxis. So, for me to have a happy GI tract, I need to be both gluten-free and other allergen-free. So, my advice is finding the right allergist may be part of the magic puzzle.

cassP Contributor
cassP
Posted

Since you want an accurate source, I recommend you avoid The G-Free Diet: A Gluten-free Survival Guide by Elisabeth Hasselbeck. ;)

ive heard that before- is it really that inaccurate?? if so, i'd love to pick it up just for a laugh :lol:

imsohungry Collaborator
imsohungry
Posted
  • Author

Thank you so much everyone for your feedback. I don't even think this doctor knows that he's going in "the wrong end" with the scope to look for Celiac. :rolleyes: He commented that he tested for Celiac the last time he "did a colonoscopy." I'm definitely finding a new GI.

I appreciate your feedback on good books to read (and thank you for letting me know which one's to avoid) B) When I was on the diet years ago, I had time to search the internet and just "read." Now, with a hyper 4 year old, I need something I can put down and pick back up...a book. ;)

Everyone have a great day.

-Julie

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