Went To The Gastroenterologist And Now Im Confused And Embarrassed

[jodikris]

Okay so I go today and basically am told since I am fat if I have it its WEIRD so WEIRD he wants to write a paper on me. I did get a positive test for DH....he then told me to go eat a biscuit and not worry about it. I AM NOT eating gluten until I know for sure on Thursday....

IM SO embarrassed!

[Guest nini]

why should YOU be embarrassed. It sounds like this Dr. isn't aware of all the latest info about obesity and Celiac. He should be the one that's embarrassed because he's showing his lack of knowledge.

Like I told you before, I have lost 100 pounds since my dx, I was def. overweight and because I was fat may have been why it took them so long to figure it out, BUT the Dr. that dx'ed me said that just as many overweight people have Celiac as the skinny underweight ones...

Any Dr. that says you can only have Celiac if you are underweight, is operating on way outdated information and needs a serious refresher course in Celiac, and YOU need a different Dr., one that knows more about Celiac.

[jodikris]

Thank you nini....I just felt like a freak for going in there and saying I think I have celiac disease please test me. He was like WHat makes you think that...so I showed him the rash and told him what my biopsy said. So he says...well here is a PAMPHLET on gas (which told me not to eat gassy foods) and let's do a blood test...but I wanna write a paper on you if you have it cuz it would be a first for me. He wasn't rude really just doubting me. I mean maybe I don't have it...but why then do I have DH? Was the biospy wrong? I am really upset about this...

Now I am scared the test will come back negative and I will be at square one...still having an itchy rash but no idea why!

[jerseyangel]

I'm so sorry that happened to you--the only weird one here is that doctor . I believe that a positive dx. of DH means Celiac. As for being overweight and Celiac, I was, and still am, about 20 lbs. over my ideal weight. Right before my dx. I did lose 15 lbs., but by then everything I was eating went right through me. After only 4 weeks on the gluten-free diet, I gained the 15 back, and have since gained a few more . Is it possible for you to find a different doctor?

[Guest nini]

DH means Celiac in my book too, and this would mean you do not need any further Dr. visits, just stick to the diet and get on with getting healthy.

[jodikris]

There are only 2 groups where I live and he was a member of the biggest group. On thursday I get the results if It says negative I am still going gluten free. If my rash goes away if I stop eating Gluten...then wasn't it the gluten... I did find this article :

Open Original Shared Link

Maybe this is why I have struggled with my weight my entire life!

Thanks for the support guys...I cried the whole way to work from the doctor...I just feel like I am never gonna find out for sure If I have it or not....

[jenvan]

If you are positive for DH, you need to go gluten-free definitely. Your doctor is just ill-informed, as many, that Celiac can occur in people who are not under weight. Sorry you had to go through that--but you have the right idea to pursue the gluten-free diet.

[floridanative]

There is NOTHING to be embarrassed about. A ten year old could read about Celiac for an hour online and know more about it than your idiot doc. I thought I had convinced my overwieght mom to get tested and along comes an aunt (by marriage) that none of like telling my mother 'you're too fat to have Celiac' or something to that effect. This least favorite aunt of mine goes on to tell my mother that she (aunt) has two friends with Celiac and they are super thin and so there's no way my overweight mom has it. If this woman wasn't in another state I'd probably be arrested for assaulting her.

Latest studies show that almost half of symptomatic Celiacs gain weight. Even my docs who didn't know much agreed that unexplained weight loss OR gain can be indicative of Celiac. Find a new doctor if you can and ask when you're calling how many Celiac patients that doc has. Good luck!!! We're here for you so you don't have to go through this alone.

And DH does = Celiac but I still think you need a doctor to follow up with you for blood tests later to see how you're doing. If blood work looks good say after 6/12 months gluten-free, new protocol is that a biopsy is not necessary.

[blueeyedmanda]

Anyone can have celiac, it can show up in both overweight and underweight. In my case, I was of a normal weight and the reason I went underweight was like a previous poster mentioned, everything went right through me. Sounds silly but I was glad to gain back those pounds when I went gluten free. It made me look healthy again. I also got my energy back, I spent alot of time in bed before I found out what was wrong.

Your doctor really needs to catch up on his reading. Celiac is more common then people think. My family doctor knows alot about it. My gastrentologist, he brushes it off. You think he would be a bit more concerned, letting the disease go can cause much worse problems.

[Canadian Karen]

He sounds like the old, old doctor mentality that you only look for celiac in children with bloated bellies.....

Tell the guy he needs to get up to speed (or at least into this millenium!!!!)

Hugs.

Karen

[mommida]

DH can cause the same type of damage to the villi, so it means the same thing - you need to be on a gluten free diet for life. Finish any testing so you can start on a gluten free diet.

I think the Dr. you went to was a very ignorant ____.

You are at a higher risk for developing an auto-immune thyroid disorder. Both are valid reasons why your weight may not be under your control, and should not be used to rule out any diagnoses.

Laura

[zip2play]

I think there are probably as many of us that are overweight as there are ones that are underweight. Don't feel STUPID, get a new doctor and move on! Idiot is what he is!

I have always read DH = Celiac too! Go gluten free and be done with that loser FOREVER!

Monica

We love ya here!

[penguin]

As some nurses told me a few weeks ago when I was visiting my grandfather in the hospital, MD has come to stand for Medical Diety.

Even dieties can be dipsh*ts.

Tell him to go ahead to write a paper, because then he would have to provide you with medical care at no cost for his research, and then he would be the laughing stock of the GI community since there is a lot of other research out there that he has not bothered to read.

It would be like saying he discovered that poison ivy causes a skin rash...

DH is a celiac diagnosis, and your doc is an idiot not to know that. Dr's figured that out LONG ago!

[Thankagirl]

My experience is I gain 15 pounds a month when I eat gluten.

5 years ago I fought the idea of being celiac because I was fat but I realized when you are not absorbing what you need your body increases its fat as a survival technique. It is not a proven study or anything - just my coming to terms with what was happening to me. I lost 50 pounds just eating gluten free.

Sarah

[Rusla]

Jodikris, the doctor is a knob. Not all Celiac's have DH but ONLT Celiacs have DH. The dermatologist thought I was too fat to be Celiac and I made him do a skin biopsy for DH. Big surprise on him, it was DH making me a Celiac and since then I have lost 30 lbs. This is in less than three months.

Don't eat a biscuit because having DH you are a Celiac and biscuits, unless they are wheat/gluten-free are harmful to you.

He should be embarassed for being such a lame ass and suggesting a biscuit.

[elonwy]

Heck there are even Celiacs like me, who though I suffer from severe bloating when I ingest gluten, didn't really have a weight problem either way. I *think* I'm fat, but thats another issue entirely, and hopefully therapy will help with that.

My GI was rude and insensitive too, until my blood tests came back positive, and then he was only slighlty less rude and insensitive until after my inconclusive biopsy when I told him I had gone gluten-free right after the procedure and all my bowel problems had gone away in that two weeks. Only THEN did he break down and apologize. It left me speechless that he admitted he might have been wrong.

And my regular doctor had never seen an adult diagnosed with Celiac, only kids.

You have to push to get what you want, don't let them bully you into anything. There are situations where I think its important for physicians to be frank with people, sometimes I think we are too sensitive as a country, but telling you you can't possibly have a disease because you're overweight is ludicrous, not to mention mis-informed. My doc said I couldn't possible have it because I didn't have any family history, so I lied and said a cousin had just been diagnosed with it, and then he did my test.

Maybe you could call him up and say "hey I just lost 5 lbs in ten seconds, could I have it now?"

Idjits.

Elonwy

[glutenfreeheather]

Oh my gosh! Sounds like your doctor is an insensitive jerk AND a moron! Do not be embarrassed...your doctor should be the embarrassed one! Obviously he doesn't know much about celiac or he'd already know that celiac doesn't mean underweight like previously thought. YOU NEED TO GET A NEW GASTROENTEROLOGIST!!! I drive an hour each way to get to mine b/c he treats a large amount of individuals with celiac. Also, I am overweight and have celiac...living proof! Don't compromise your health....find a new doctor ASAP!

[jodikris]

Thanks guys....i really needed to hear these things...if My bloodwork is not positive I am going to go back to the dermatologist and force him to biopsy me again!

[Lollie]

You don't need any more biopsy's. You already got a positive. You have celiac. End off story. Your doc is living proof that going to school can only teach you so much, you have to continue to study. Unfortunantly, alot of doc's forgot about the self learning part. I had to take literature to my doc to get my inconclusive bloodwork......Maybe when you go back in you could give him a copy of your research.

Lollie

[plantime]

I don't agree with getting another doc. Let this one learn the hard way that he is wrong. Be the one that shows him the truth about celiacs. My regular doc had to learn the hard way, since she insisted that I was too fat to be celiac. The surgeon that removed my gall bladder learned the hard way, too. They were both surprised by the "ulcer" report from the GI doc that said no ulcers, just celiac and a bad gall bladder.

I have noticed a pattern in the posts on this thread: the docs were surprised by the diagnoses, but the patients were not. Docs do need to study more, and keep their own education current!

!

[MACE]

I was also over weight and believe that was part of why I did not get a DX for so long. I have lost 40 pounds since going gluten free. Not everyone is skinny from it.

[debbiewil]

jodikris,

If the doctor doesn't believe you, maybe he'll believe some of these articles. Print them out and bring in to him, especially the first one, which is the NIH consensus on celiac disease. And also point out that the obesity and celiac link is already well established, since NIH includes it in their celiac information. And DH is celiac.

Debbie

"Since celiac disease is a multisystem disorder, the clinical presentation is highly variable. Gastrointestinal manifestations may include diarrhea, weight loss, failure to grow, vomiting, abdominal pain, bloating and distension, anorexia, and constipation. The presence of obesity does not exclude the diagnosis. It is very common for celiac disease to present with extraintestinal manifestations, sometimes with little or no gastrointestinal symptoms. A distinctive example is dermatitis herpetiformis, an intensely pruritic rash on the extensor surfaces of the extremities."

Open Original Shared Link

"The presence of obesity, normal or tall stature, absence of diarrhea, or advanced age or even the absence of a deficiency state does not discount the possibility of celiac disease."

Open Original Shared Link

""Classic" celiac disease presents with GI symptoms and wasting, but most celiac disease does not present in classic form. It is important to note that celiac disease can be 'silent'- totally asymptomatic, until the complications of malabsorption begin to set in many years down the road. Some adults suffer depression or anemia as their only symptom. Children's symptoms can be as mundane as stomach aches and canker sores. One can be tall and/or overweight and have celiac disease, counter to many physicians outdated beliefs. Twenty percent of those with celiac disease suffer constipation rather than diarrhea...and only 50% have diarrhea. GI symptoms can be absent."

Open Original Shared Link

[jodikris]

WOW you guys know your stuff. The next time I get on the computer at my house I will send anyone interested pictures of my DH...it gets very bad. Right now I have bloody arms from scratching...how can anyone look at that and not say: SOMETHING IS VERY WRONG HERE! My Dermatologist has been mine for 16 years..and he could NOT cure this! that is what he gave me the biopsy...im actually really mad after reading some of yall went through the same thing! I almost HOPE i have it now so I can say something to him. I would like to say...Okay Doc now how about I tell YOU how to treat me since i had to tell YOU i had celiac disease!

[penguin]

I almost HOPE i have it now so I can say something to him. I would like to say...Okay Doc now how about I tell YOU how to treat me since i had to tell YOU i had celiac disease!

You can march right up there today because you DO have celiac. DH is a celiac thing, end of story, game over, the end.

Get gluten-free now, because you're one of the lucky ones with a difinitive dx!!!

[watkinson]

I was slightly Hypothyroid for years. My bodies metabolism slowed down as a means, I believe, to keep me alive. I wasn't getting any nutrients so my body thought I was starving. After going gluten-free, I started losing weight immediatly. 5 pounds the first week. I was eating more food than I was before and obviously retaining it instead of throwing up or having liquid diareah. In about 9 months I lost over 30 pounds, and am now a size 2 or 4. Hypothyroidism is very common in celiacs. Have your thyroid levels checked. If they are in the normal range but on the low side of normal, consider getting a gluten-free thyroid aid from the health food store. I get mine from Whole Foods. I've also noticed that I am less achey after I started taking them. I think it's the high levels of Magnesium.

Anyway...like everyone else has said...your doctor is ignorant on the subject of celiacs. In my opinion any doctor who give advice on what to do to treat a disease they know nothing about crosses the line and becomes a moron. Like someone else said on this thread "A 10 year old could spend an hour on this site and learn more than your doctor knows." I agree whole heartedly!

I also spent 20 years going to different dermatologists about a stinging itchy rash on my face, neck, chest, and upper arms. I was never given a reason, or had any testing done. They always told me to try this medicine or that. Well guess what...of course it went completely away as soon as I went gluten-free.

Doctors!!! GRRRRR

Good luck, Wendy