New Here

[TombRaiderShan]

Hi everyone,

I am new to all of this. My story actually begins with my mom. For years she had digestive problems, but everything was going severely downhill early last year. She finally had her gall bladder out, but still wasn't well. Finally, she had the blood test, then the endoscopy which determined she had flat villi. She also dropped down from 150 lbs to 121 lbs in just a few months. When she told me all of this, I was thinking that my digestive woes could be due to celiac disease.

I went to my doctor and wanted a full panel done including a celiac test. Well, he flat out told me that there was no way I could have celiac disease (since I am overweight), but he was happy to diagnose my IBS. I wanted the blood test, but he wouldn't give it to me, he told me that even if it was positive, no hospital in the area does the endoscopy. I would have to drive 2-3 hours to have it done. He told me that I should just go on the gluten-free diet and see if I feel better. Why are doctors so uneducated about celiac disease? He even questioned my mom's diagnosis since she wasn't diagnosed as a child!

Anyway, my situation is this: I was very bloated and gassy, with D and constipation, painful abdomen, depression. I decided to go on low carb and of course gluten-free. I feel so much better on low carb than on low fat, plus I need to lose weight. All of the above symptoms went away for the most part, but I am still having a big problem with edema. I have pitting edema in my shin area and ankles. This concerns me, because low carb has a diuretic effect normally. I am also taking ditropan due to urinary issues. I am trying to cut back on salt, but everything I eat is salty, since I don't eat anything sweet. I decided to order some dandelion root to see if it helps.

Is anyone else doing gluten-free low carb? It's nice to find a forum to visit.

[happygirl]

Welcome to the board!

You may be interested in this article....as well as your doctor.

https://www.celiac.com/articles/1077/1/39-o...bese/Page1.html

[TombRaiderShan]

Wow! What an interesting article, thank you! I had no idea that so many celiacs are overweight at diagnosis. I found it interesting how the article stated that doctors will refuse to test overweight patients, since that is what happened to me. I could have just gone on feeling horrible and continued to decline healthwise.

[happygirl]

I'm glad it was helpful.

I'm not sure where you live, but an endoscopy is a pretty "basic" procedure in the realm of medicine. May be worth it to call your local hospitals and ask if they perform routine endoscopies.

May be worth it to look for a doctor that will perform the blood test for you, as well.

[TombRaiderShan]

Hi again, happygirl, I live in the middle of Nebraska. I was a bit skeptical as well when he made that claim, since there is a good size hospital only 20 miles away. I don't think it would be prudent to get a blood test now because I have been eating gluten-free for about 2 months, so I would probably get a negative. If the blood test is negative, no doc is going to ok the endoscopy.

I should have pressed the issue when I was symptomatic, but it would have cost a lot (even with insurance), and in the end, I would do what I am doing now. In my mind I have celiac disease, like my mom. Eating this way makes me feel like a million bucks, so even if I can't legitimately say I have celiac, gluten-free has changed my life.

[mushroom]

There are hundreds of us self-diagnosed celiacs running around here because no one would test us. It is so sad to think it is still happening. So much unnecessary suffering has gone on, brings tears to my eyes. "When will they ever learn?..When will they EeeeVER learn! But I'm glad you blew 'im off and did the thing you knew was right.

[happygirl]

Eating this way makes me feel like a million bucks, so even if I can't legitimately say I have celiac, gluten-free has changed my life.

This is wonderful!

[DakotaRN]

Welcome, I am glad that you are feeling better. I know what it is like to live so far from medical help. I live in rural N.D. Just take it one day at a time. You will find lots of great support her.

[Jestgar]

gluten-free has changed my life.

That's the bottom line for most of us. I'm glad it's making a difference for you.

[TombRaiderShan]

Thank you, everyone for your kind words. @mushroom: That makes me feel better regarding the fact that many folks are self-diagnosed, because a part of me felt like I might get chastised here for not seeking out a doc to test me. I appreciate how supportive everyone is!!

[Chrissyb]

I was also overweight when I started eating gluten free with in the first 6 months I lost 40lbs. That was a big plus for me not to mention I was starting to feel better. That was a year ago. I have since had to remove dairy from my diet also and may be more to come once I start doing a food diary since I am still have some problems. It could be that I have a mixed kitchen and I am getting some cross contamination. For the most part though it has been all good.

[angieInCA]

I'm a gainer. I was 50 lbs overweight at diagnosis. First Dr. told me I couldn't have celiac disease because I was overweight. New GI told me after looking at all my symptoms that he was 99% sure I had celiac disease but I had already stared eating gluten lite and had a very weak positive. I tested positive for DH so I opted not to have the endoscopy, didn't see the need for the time or expense.

I'm 48, was misdiagnosed for 47 years. Gluten free for 7 months and feel better than I ever have in my life.