Weight Loss/gain

[floridanative]

Well I guess I'm just as perplexed today as ever after meeting a new GI that I know has more knowledge about celiac disease than the other two docs I've seen before combined. The first and only GI I saw before today told me based on my out of the blue anemia and postive result for the tTg test plus the bloating, gas, stomach aches and so forth, he thinks I have celiac disease. I decided that I needed to rule out an iron disorder so I saw a hemo doc who told me he doesn't think I have celiac disease and he'd prove it with a biopsy. He seemed determined not to diagnose me with celiac disease so I went to the new doc today (after being referred by someone with celiac disease in my same area). So this new doc is doing the biopsy on the 11th (finally and he really didnt' seem to even want to do it at all...) but he said this 'I can't imagine why the other GI thinks you have celiac disease. If you haven't either had weight loss or even weight gain you probably do not have Celiac'.

So my question is do any of you other Celaics - did you all either gain or lose a considerable amount of weight before diagnosed? I'm just so frustrated at this point I could scream. The other two docs wanted to do a biopsy - one to prove I had celiac disease and the other to prove I don't. But this doc today made me feel like a hypochondriac and I felt like he wasn't even willing to do the biopsy at all. I sort of pressed him that I guess I'd go back to one of the other docs to get it and then he changed his tune and scheduled it after all. Anyone else experience anything similar?

[Guest schmenge]

I had my biopsy 2 weeks ago. It showed Celiac, and my doctor tells me the biopsy is 100% conclusive. I have not had any weight loss or gain.

[floridanative]

Thanks for your post schmenge. I guess the biopsy will tell all or nothing so I just have to wait a few more weeks for an answer.

[jerseyangel]

Hi Floridanative--I lost 15 lbs. in the 6 months or so before my DX, when I got really sick. At that point, though, everything I was eating went right through me. Before that, I was always trying to lose a few pounds. When I went gluten-free, I put 10 lbs. back on in the first 2 months. My Dr. said it was normal. Out of curiousity, why did you not stay with the 1st. Dr. that thought you had Celiac? It sounds to me that he is more knowledgeable about it than the other one. I hope you don't mind my saying that, I'm just trying to help

[Guest schmenge]

Thanks for your post schmenge. I guess the biopsy will tell all or nothing so I just have to wait a few more weeks for an answer.

Yes, then you should know for sure. I am fairly asymptomatic, which may explain why I did not have the weight loss that many do experience. What led the doctor and I down the path to look for anything was also anemia. I had the anemia for about a year and then a change in bowel habits. So those, along with a Grandmother with colon cancer and a brother with Crohn's made us start checking things. I had never even heard of Celiac before and the doctor didn't even mention it until he took a peek at my intestines. My Grandmother and her brother both had sprue, which is from I can tell the same disease with a different name and she was quite thin before she started her gluten-free diet. According to my mother her uncle literally starved to death from sprue (not much was know at the time I guess).

I lived in Florida for almost 8 years. I didn't think anybody was actually *from* there.

[Guest nini]

um, I'm actually FROM Florida

[floridanative]

I appreciate any and all comments as I'm so perplexed. The reason I changed to the other doc is the first GI said 'you may have Celiac Sprue, it's very rare and it's an allergy to wheat'. Then he promptly made me have a colonoscopy - not the biopsy first. After the colon test was fine, we scheduled the endoscopy and his fill in scheduler person said 'we don't do biopsies here'. That was disturbing so I waited until the reg. girl got back and called her and she said 'well the doctor will do a biopsy if he sees anything'. I've heard of too many people having upper scopes without a biopsy being done so I wanted someone more updated on celiac disease to do the test. I met someone on this site who lives in my area so she recommender her GI to me and he saved her life so I felt like he'd be better to do the test. He even answered his cell phone very rudely in front of me today so maybe he was just having a bad day. He talked a lot about celiac disease and he does know a lot more than the other GI or that's the impression I got anyway. My past experiences have been when I've been told nothing is wrong with me, the docs who say that always have to eat their words when the tests show otherwise. Guess I'll know soon if this doc is right or wrong about me.

p.s. I'm actually from FL too! I didn't know nini was too.

[Guest nini]

yep, born in Sarasota!

[jerseyangel]

Well, best of luck on the biopsy-- The hard part is the wait. And I agree--it would be awful if he (the other doc.) did the Endo. and didn't take any biopsies. (what did he expect to see, anyway?) Why do they have to make it so complicated

[floridanative]

I don't know what the first doc thought - I know you can't always see minimal damage with the scope even.

Luckily I have a trade show in Orlando next week so I'm going to enjoy myself and the sunshine and not worry about it until I get the test. I was so upset today that I didn't even think to ask how long it will take to get the results but the office is connected to a hospital so maybe that will help.

Happy New Year to all my cyber Celiac friends!

[jerseyangel]

Have a great time in Orlando and Happy New Year to you!

[KaitiUSA]

You don't have to have any symptoms at all to have celiac. I had weight loss but not everyone does. I swear I can lose weight by thinking about gluten containing foods lol.

[floridanative]

I was so upset yesterday that I totally forgot to ask another question regarding what this new GI said to me. He asked if anyone in my family had celiac disease or had colon or stomach cancer. I told him not as far as I knew (but my family is the kind that doesn't talk about that stuff and anyone who may have had something is already dead now). So he looked at me like I was crazy and said 'well the chance that you could have celiac disease and no one else in you family has it, is pretty slim'. Do all you Celiacs out there have people in your family that had/have it or celiac disease related illnesses? My own Mother had her gallbladder removed and it was diseased but she never had gall stones even once. She's has arthritis since she was in her 40's. The way I see it is there must be lots of people out there walking around with celiac disease since the statistics show not everyone is being diagnosed properly. Any thoughts?

[jerseyangel]

No one with Celiac that we know of BUT my mom has Antiphospholipid Syndrome which is autoimmune--its a clotting problem. I had her get tested for Celiac because the Drs. also feel she may have Lupus, but have not DX her yet. She was neg. on the Celiac blood test. She also has many symptoms of Celiac (miscarrages, anemia, constipation, hair loss etc.). I still feel she may have it, but she feels the test was the last word. My dad had pre-cancerous colon polyps (removed, doing fine). My sister had similar symptoms to mine but dosen't use medical Drs. She sees a Kineisiologist and is on a gluten-free,d/f diet anyway. 2 women in my extended family (mom's side) have MS. My maternal grandma had arthritis and died of pancriatic cancer. I think there is an autoimmune link there somewhere. I don't remember the exact numbers, but I've read over and over that only a small percentage of Celiacs are diagnosed. Hope you feel calmer today

[floridanative]

Thanks Patti and yes I'm feeling much better today. I'm pretty sure my mother had pre-cancer colon polyps removed once too and I mentioned that to the doc. Anyway, it won't be long now before I'll hopefully know something one way or the other. I think the doc knows what he's doing regarding the test at least. Thanks for sharing your info. I agree with you and think many people are walking around with celiac disease and they don't know it, and may never.

[Guest nini]

I believe that my mom has celiac, but she refuses to even consider the possibility. (she likes her homemade sourdough bread entirely too much)... She has always had bowel, IBS issues with Constipation, miscarriages, anxiety and depression issues, when she went on the low carb diet and stuck with the naturally gluten free foods, she was healthier than she had been in years and even lost a ton of weight. BUT... she is not diagnosed with Celiac and refuses to get tested. That being said, it is just me and my daughter that have been dx in my family.

Keep in mind with the biopsy that it can only rule Celiac IN. If they find damage then it is conclusive, BUT... if they do not find damage, that STILL does not mean you DO NOT have it. KWIM? Some people have no symptoms at all and have lots of damage to the intestines, or on the other hand have lots of symptoms, negative or inconclusive bloodwork and a negative biopsy, YET they still respond favorably to the gluten free diet. In my honest opinion now after almost 3 years of this, the dietary response is the most valid of all testing. SO, if after your biopsy, you still do not have a conclusive answer, DO NOT rule out trying the diet for at least 6 months to see if it helps you. You may be surprised!

There is still so much the medical community does not know in regards to Celiac and Gluten Intolerance related illnesses, The current medical guidelines are still based on the outdated notion that Celiac is very rare and only affects children and sufferers would have to have lost an outrageous amount of weight.

I believe the Dr.s are (for the most part) doing their best, but they are limited by imperfect testing and outdated thinking. I think the new Dr. has more new updated knowledge, but is still medically based, so just keep that in mind... There is a reason they call it "practicing medicine"