2 many drs bad opinions?

[aloneinidaho?]

I have been living in complete hell for well over a year, After my first back surgury in Dec. 2002 I gained over 35 pds, started getting puriphial neuropathy so bad I gave up sleeping. Dec. 2004 family Dr. tested for celiac. blood test was pos. But he said I did'nt have it too bad so I could eat it here and there. Had so many stomach, leg and mental problems since, that he has tested my blood 2 more times since, came back pos. read up on this celiac and decided to stop eating it completely. after several months I sleep again and all the pain in my back is about what I can deal with. Still have alot of stomach problems but not as much. But I feel like I am completely out of it mentally, like I am walking in my sleep, cant think clearly, kind of in a fog mabey I'm going nuts. wont take that for an answer, so I go to a gastro dr. he does a biopsy. Of course he says no celiac, don't follow that diet, you and you daughter have too many symtoms, you cant have this the only symptom Is diarea and weight lost, But since Aug. I have lost about 40 pounds and its all been from going to the bathroom. he says it does not matter you have too many other symptoms, and neuropathy can not come from gluton anyway. Well since I went back eating this poison the lasy two weeks for this biopsy, guess what, legs hurt so bad I am back to being the night stalker w/diarea. Am I nuts or are these Drs nuts HELP

[maria1223]

I can relate to u I've been dx'ed since dec 2004 with crohn's & celiac. I also have narrowing of the esphogus & a hiatal hernia. I've had some real quacks. I have had biopsies & all the normal test. no one could tell me what was happening I was put on all kinds of meds I took 19 pills in the morning 4 in the eveing & 4 at bedtime. had mood swings so bad that I could n't stand myself. they told me that I had bipolor. I was so sick of hearing that I don't know what is wrong here is another pill. finally I went to fox chase cancer center They told me everything In 2 visits. Plus they kept in contact with my primary. when this first started I lost about 60 pds. then I gained about 80 lbs. My thyroid has been out of control I have been getting tested 1x a month for that. I love my new GI Dr., my cancer Dr., & my primary Dr.
I hope that you have better luck at finding Dr's that know what the H--- they are doing. and no your not going nuts we all been there at 1 x

[aklap]

[aloneinidaho?]

Thanks you guys so very much for your replies it really helps and this forum has given me alot of info and encouragement. all that info you gave was alot of help, I have been reading till my eyes get blurry, I wounder how much more I know about this silly disease than my dr that is supposed to specialize in it? And yes my 17 year old daughter has been throwing up every time she eats cant go to the bathroom for a week at a time, dizzy, head aches, nuaseated always and sleeps all day long, exausted bad. My family dr finally did her blood test at the beginning of nov. it was pos. but again not to bad so you can have wheat products here and there. I said not here or there! but this doppy g.i had here go off it for three weeks for the biopsy too. funny thing, she started throwing up again, we were both walking around the house bent over, holding our stomachs and moaning you'd think we ate the cat. her test has not come back yet, but he said hers looked real good, he doesnt think she has anything wrong either. Well I am not a dr. but My own test says we have a problem, and I believe were eating it. thanks for all you help carey/idaho

[aklap]

Hi Carey,

OMGosh...if your doc "specializes in CD" and tells you that you only have to limit (not remove) your wheat intake? His medical license should be pulled!!! That's the problem, so many docs are still in the dark ages when it comes to CD.

That's just nuts!!!!!

There's no cheating in a GF diet.

<< We interupt our regularly scheduled program for a side trip into Al's brain >>

This reminds me of the line from "A League of their Own" - a Tom Hanks movie...."Are you crying?...Are you crying? There's no crying in baseball!!"

Now the gluten intolerant version..."Are you cheating? Are you cheating? There's no cheating in a gluten free diet!!"

LOL Sorry...Some times my brain makes those side trips...

<<We now return you to our regularly scheduled program....>>

The way I see it, you have a couple of options:

1) If you don't need a piece of paper that says "You can't have gluten'...consider going GF and don't look back. I think you've proven it to yourselves that it really is something that you're eating that causing you problems.

2) If you do need that piece of paper...try to get to a different doc. A 2nd or 3rd opinion never hurts...whatever the reason. Or you could to the unconventional route and use EnteroLab and get a stool test. Dr. Fine is not accepted yet by the mainstream medical society...but I think he is on to something.

Do you know what tests were run? If the full celiac panel was not run, you may not be getting a true picture. That can make a big difference!! You might consider getting copies of all your lab results. I can't tell you how many people have done this only to find out something was missed and they were not told. It's real easy to do, just call your clinic and ask for the medical records dept. and ask to get copies. You will be required to stop in an sign a release of records form, but that's it. (Peg, my wife, works in Med Records )

Keep reading Carey!! The more you know, the better you'll be able help yourself and your family thru this!!!

Keep us up to date, OK??

Take care.
_________________
Al

“We cannot all do great things, but we can do small things with great love.” Mother Teresa

[aloneinidaho?]

Hey Al, I am such a duh. I forgot to mention I have a sister that just turned 50, shes 9 years older than me. for atleast 10 years she has had so many problems with her health and the drs cant find 1 thing wrong with her its all in her head well we all have been woundering the same thing. Well after my dx in 2004 her daughter having so many problems got a blood test, and hers said pos. But my sister is pretty much home bound so she cant work and does not have insurance, so she relies on the v.a. they will not test her for celiac because they say it is a b.s. disease. but when I start reading all the symptoms, I swear I thought I would see her picture there. as far as my blood test it was Dec 2004.
antigliadin AbA, IgG 7 units 0-19 normal
antigliadin Abs, IgG 27 units 0-19 normal
t-transglutaminase(tTG) IgA 6 units 0-19 normal
But then Nov 2005 after being off gluten for a few months my test was
Antigliadin Abs, IgA 6 u/ml 0-4 being normal
Antigliadin Abs, IgG 3 u/ml 0-9 being normal
t-Transglutaminase(tTG) IgA 1 u/ml 0-3 being normal
t-Transglutaminase (tTG) IgG 2 u/ml 0-5 being normal
But I took my biopsy last thursday and went back on my diet as soon as I got home!!!!!!!!!!!!!! I just pray that it wont take months again to get rid of this *&^^$$%^&**&& NUROPATHY
CAREY

[isto]

I don't think Doctors pay any attention to all the side-efffects from gluten when you are gluten-intolerant. SO MANY of the things you describe sound like things caused by gluten! Stick with the diet and give your body some time to detox. Many people think as soon as they go off gluten they will feel 100% better, but it takes a while. My body went through a kind of withdrawal. It was painful and I got sicker before I actually started feeling better. Hang in there and stick with rice, potaotes, fresh meat and veggies!

Danita
_________________

[aklap]

[Guest]

[Kathie]

Yup, when I was diagnosed my first doctor told me I could cheat too. Then someone told me that small amounts of cheating over time could cause cancer even if you didn't have symptoms. Of course is that true? Don't know, but I figured I would probably ingest enough gluten accidently in my life time that I didn't need to intentionally put the gun to my head. Unfortunately we were choosen to have a disease that takes place inside where they can't easily see it and for science if you can't see it, its not there. I have had celiac disease since 1988 when the endoscopy showed almost no villi, the Doctor described my intestines as completely smooth. Last November my new Doctor told me that he couldn't tell me that I had Celiac disease because the blood test and endoscopy were normal, even showed me the pretty picture of my little villi. Although maybe I did he concured, because I had shown him the reports from 1988. All of which to say I KNOW what I have and I know how I feel and until the day comes that they found some genetic marker that is specifically for celiac disease and can test us for it, we will all have to continue to support each other because science won't. So welcome to the group and keep smiling Oh yeah, I had non-specific neuropathy in my feet and they thought I had Lupus, for me all of those symptoms went away after about a year of being gluten free, I did have to take two weeks of prednisone therapy though to jump start my system because I was still having problems after a few months, I had a new doctor by then who actually new something about CD, I found him through a CSA/USA convention at the Cleveland Clinic. Good Luck

[Ciddings]

[dkad]

[Fawn in CA]

Gluten Ataxia IS very real. So is a foggy brain and blurry, changing vision. Improves (and may resolve) on a gf diet, but may take 5-6 mos to feel your best.
The only way a gf diet can hurt is that you can't have a reliable biopsy.
BUT, at the Stanford Conf they said that drs shouldn't order people to go on a gluten challenge diet to have a biopsy, and biopsies shouldn't be done on:
Children under 4
Elderly
Emaciated
Pregnant
People who have or have had neurological problems/ataxia
People who have or have had allergies (they may be thinking of throat swelling)
People who have or have had hives (probably same reasoning as allergies)
SO some people should definitely try a "half-baked" diagnosis, go gf, and rule out other diseases as necessary.
Just because CD isn't "officially" diagnosed, don' refuse to help yourself if no one else has a good resolution to your problems
Drs are very reluctant to recommend a gf diet without a gold standard diagnosis - because it's so difficult to get used to. But how often has the same dr prescribed antibiotics or other meds when they might not be quite right, and may even have some bad side effects?
The only risk in doing the gf diet yourself is if you don't get checked for some other disease(s) that you might have. The diet itself may pay big rewards, even if your dr can't feel like a hero for finding an answer to your poor health and it is a big adjustment.
Some one mentioned dinner. One of our favorites uses 1 - 1 1/4 pound of gf ground turkey (we use Jennie-O b/c their natural flavoring is rosemary). Brown it and add quite a bit of gf teriyaki sauce. Chop and add 1 bunch of gr onions and chop and add 1 can of water chesnuts. Serve with lettuce "wraps" or white rice. Serve with chopped peanuts or cashews, and/or flaked coconut. Add some carrot sticks.
Reheats very well for another night, too.
Trying to get used to a new keyboard and have a bandaid on 1 finger.

[Fawn in CA]

I've also heard that cheating can be dangerous. Never knowingly eat gluten, and guard against accidents.
Makes you wonder why some doctors want anyone to go on a 6 wk gluten challenge diet - that's so much gluten, and the gf diet is so safe. Especially wonder what their reasoning is if the gf diet is helping and they don't have any other suggestions to help.
Another tidbit from the Stanford Conference - after you are feeling well on a gf diet, just say you're "celiac" or "gluten intolerant" and drop any reference to a "disease." Makes sense, doesn't it? People with other intolerances don't refer to their condition as a "disease"!
I thought that advice was empowering, and I kind of think of the diet as a treasure hunt instead of restrictive.

[chia_monkie]

I've been sick off and on my whole life, slowly getting worse and worse until about 6 months ago I couldn't even leave the house anymore. My back killed whenever I even did laundry. I have scoliosis so I always assumed it was that. But once I got off gluten it went away. I actually found out because I know a family friend that's a homeopathic doctor (not sure that's what he calls himself). I had wanted to go for him for quite awhile because I have an ulcer and suffer from depression. But it was always a matter of money. Each visit costs at least $200. But once I couldn't leave the house we went and just did without things we didn't need. I'm a lot better now. Although I still only weigh about 100 lbs. It's hard to gain back when you can't eat breads. If I do end up eating it I go crazy!!!! I have mood swings and I'm easily irritated and angered. I still get sick every time I eat, and tired every time I do pretty much anything, especially take a shower for some strange reason.