Does This Sound Familiar

[Mae]

Hello, I'm a 46 yr female, married with 2 children and 2 stepchildren. I've had several health concerns throughout my life including hypoglycemia, endemetriosis, many food allergies including wheat, osteoporsis at an very early age full blown, gastroparesis, 3 back surgeries, compression fractures and just not feeling with it. My husband and I just moved to GA area 6 months ago and I ask a local doctor if he could test me for Celiac. He said all american's have digestive problems, diarhea and osteoporsis. I disagree with this. I would like some answers to why I've had sooo MANY health issues at my age. It seems like I have some similarities. Also I was wandering if anyone has gastroparisis with celiac? How do I find a doctor that will test me for this? Do any of these symtoms sound familiar? Thank you!

[Guest jhmom]

Hi Mae, unfortunately it is hard to find a doctor that will test you for Celiac disease, they think it is very uncommon to have it, they are SO wrong and SO uneducated.

I live in GA too and my doc kept telling me I had IBS and only tested me for Celiac after I lost 40 lbs in a very short amount of time. When the bloodwork came back negative he was quick to dismiss Celiac and stuck to IBS.

If you cannot get the doctors in your area to do what you want them to do then you could always check out www.enterolab.com Dr. Kenneth Fine performs stool panel test which he says are more sensitive than blood work. This is how I was diagnosed after visiting numerous doctors and enduring multiple tests / procedures.

Good luck to you I hope you find answers soon!

[Guest eileen]

I would insist that the doctor do the blood test. I went through all kinds of things before the blood test was done including getting my gallbadder removed, having diaherra for 1 year and sever abdomial pain and was in bed for almost a month before my internal medicine doctor did the blood test.

Then I was told by a local GI md to go on the celiac diet and I did and got better not instantly but I felt so much better. Then the local GI md sent me to Stanford to a specialist and he did the biopsy and it came back mildly postive. He told me to stay on the diet if it is working don't change it.

[DLayman]

I would brow beat your doc into the test.. what can it hurt?? It's just a blood test!!!!! good lord he doesn't have to pay for it!!!!! Call his office every day for a week two weeks bother him into it.. Then you know what if it comes back positive.. you can 'educate' one more doctor!!!!

Yes lots of americans have digestive problems yes lots of americans have osteopourosis(sp?) and YES lots of americans have CELIAC!!!!!!

HMMMMM

[JsBaby-G]

Mae

I know exactly what you are going through. I've been sick since the day I was born and all the doctors told my mom it was all in my head and that I was doing it for attention. Then I met a wonderful doctor and it took me 6 months to get a diagnosis. Now I'm fighting to get my family tested and no doctors want to test them. YOU have to fight for your health because no one else will. You fight until you find a doctor that will test you! You are worth the fight.

Good Luck!!

[hapi2bgf]

Hey Mae,

What part of GA do you live in? I'm on the outskirts of Atlanta. I lucked into a fabulous doctor at Piedmont Hospital. In the past, I have had surgeries looking for endometriosis. I've lost tons of weight and couldn't gain any weight. My OB referred my to this Dr as a presurgery check. He looked at me and told me my gallbladder was not working and my stomach was not working (gastorparesis). I think I laughed at him. Then he ran all of the tests to back it up and sure enough neither was working. I had a celiac blood test done (it runs in my family) which came back slightly abnormal. But the endoscopy showed text book celiacs. I improved quite a bit on the gluten-free diet. I am now off of the gastroparesis meds and a few others meds. This guy is my doctor for life! I trust him completly.

Pleas ee-mail me privately for his name and phone number. hapi2bgf@yahoo.com.

[Mae]

We live about 70 miles north of Atlanta. We came from Duluth but we are from Missouri. We really like it here and plan to make it our home. I really don't know if I have Celiac but I have a long history of the same symtoms. I can't thank all of you enough for all the kind words and help you've given. I have a doctor's apt in a few weeks and we plan to have me tested. I can tell I'll be coming back here if I test positive for Celiac and if not I'll let you know one way or the other. Thanks again!

[Stephanie7297]

My sons both suffer from Gastroparesis. My 4 year old has had the IGG, IGA, TTGAB, Endoscopy with Biopsy: IGG 118, IGA 48, TTGAB Neg., EGD w/biopsy: Long and intact villi, patchy inflammation present. Now I had emailed a dr (sorry can't remember who) re: my 4 year old and he replied with this "Celiac Disease can cause Gastroparesis"..I almost fell out of my chair. Now my sons Ped. GI says since Biopsy was Negative that my son does not have Celiac Disease. I and my Pediatrician say "Since he has responded so favorably to the gluten-free diet (no more tummy aches, constipation, and he is finally growing and gaining weight- catching up to his age group in both categories) that he does have Gluten Enteropathy and that he is staying on the diet.

I hope this helps some...Sorry I cant find the email that I had showing the reply...but I couldn't help but answer you post..I would have to say that yes it's possible to have celiac disease and Gastroparesis (as in my sons case the Gastroparesis was caused by Gluten Enteropathy). but that is just my opinion and I am not a doctor..Hope this helps some..Steph

[aldociao]

Hello All,

Since determining recently (self-diagnosis) that I have celiac disease, I've been trying to convince my sister Nancy that she might also have it, considering the number of celiac disease-like symptoms she's had over the years. Well, she did the testing but it seems to me that it was not thorough enough, at least in regards to celiac disease. But I don't know. I was hoping that some of you might be able to read her latest words on this and determine if she is going about this the right way or, rather, is her doctor doing all he should be doing.

I will quote from her recent email: "I had a colonoscopy and an endoscopy. The first one was where he found a precancerous polyp. He did not do a biopsy for celiac disease. During the endoscopy he found mild gastritis as well as a hiatal hernia with a schatski ring. I can't imagine I have the disease, though I do believe something is amiss. If anything my stomach and intestines seem better after eating pasta or bread, but maybe that is a wrong impression....The thought of getting that pain again [in abdominal area] is pretty scary since the pain seems to be getting worse with each episode."

Thanks for your help. --Aldo

[Guest mvaught]

Mae,

Something sounds familiar to me too...endometriosis AND annoying doctors. When i was 15 (i'm now only 30) I was diagnosed as having hypothyroidism and IBS...well, i knew there was something else wrong with me and went to 5 gyns until finally someone did an endoscope and found endo. well, since i had a very positive diagnosis with endo with adhersions (and 3 subsequent laps after that) all of my stomach issues stemmed from adhesions, so IBS was likely not the problem.

well, this summer i was diagnosed again via endoscopy/colonoscopy as having IBS again (although i had so many patches of inflamation that he thought it was crohn's disease - this proved, false, of course - after a very costly capsule endoscpoy). that doctor bascially told me not to come back and to take over the counter gas medicines- there is nothing wrong with me.

also during the summer, i was diagnosed as having interstitial cystitis which i now have an implant for (those of you with bladder problems - ask you doctor about IC) which has actualy helped a lot for that.

well, my mom knows someone that has celiac disease and told me to try going off gluten to see if it worked....indeed it did. when i don't eat gluten, i still have some problems (so there are other sensitivities), but when i do (i accidently ate a corn crust pizza thinking it was ok- but oops wheat) i imediately feel like i have the flu and have all the GI symptoms, etc, get very sleepy - joint pains - the works. i am SURE i have celiac disease.

I am a PD student and unfortunately have to go to the health center (before specialists) where i have a horrible doctor that in the least will give me whatever referral/tests i ask for, that is if i am mean or emotional enough... she has agreed to perform one of the tests for celiac but wants to wait to do the others if that one comes back negative - of course this means going back on gluten to get a diagnosis..ughhhh. and doing them one at a time means, longer and longer on gluten...

as far as the thyroid - my tests often come back as "too low" (meaning on too much synthroid) when actually i AM on the correct dosage (i can tell by how i feel) - it was hell to convince my doctor not to lower my dosage - but she now is tired of fighting with me. li have been lowered and even taken off by several doctors and i get sick sick sick. (remember that the test is an average..so if you body doesn't work on average - the level will be off for you)

long story - made longer..i feel your pain. i have a lot of friends in GA (my husband is from there) -and am willing to travel to a doctor that knows something and will listen. i am determined to get a celiac disease diagnosis and am totally convinced that i have it. if you have any luck can you please email me? (or anyone else)

michelle@severinestudios.com OR sharkfam@hotmail.com

-michelle

oh and yes, i am hyphglocenic too, of course.

-michelle

oh and yes, i am hyphglocenic too, of course.

-michelle

sorry - hypoglocemic i mean -

[StrongerToday]

Wow - I am so blessed! I finally went to my doctor after months and months of "tummy trouble" and he said "most people w/ these symptoms are allergic to wheat and/or dairy - don't eat it for three weeks and see how you feel". I'm the one who was saying "NO - don't you want to take my gallbladder, or perform GI tests". I mean - give up wheat??? How would I survive???

But I am - and feeling better every day!!

[jerseyangel]

Ev--Happy you have such a smart Doc! Continue to feel better