I Can Ow Sooo Appreciate The Frustration Celiac'S Feel!

[luvs2eat]

My 27-year-old daughter was diagnosed by endoscopy biopsy last fall (I was diagnosed about 9 years ago and her older sister about 5 years ago). Her symptoms were the usual in our family... severe GI distress, etc., but hers have escalated dramatically to include mouth ulcers, skin rashes, and other things. She's cut dairy and grains out of her diet and is living on about 3-4 kinds of protein (turkey, chicken, shrimp) and about 5 veggies. One doctor thought she might have interstitial cystitis, so she cut out all the foods that make that worse. Her primary care doc sent her to an allergist and everything except the obvious gluten issues came up negative. She was sent back to her GI doc who had her in tears.

When he found out she'd been doing internet research (and who doesn't when they're trying to figure out what the heck is going on???) he said, "Oh great... you've been doing internet research. Why don't YOU tell ME what you have??" DD burst into tears and said she's just trying to learn more! She'd actually wondered if she wasn't suffering leaky gut... she seems to have all the symptoms people have listed there.

He told her she should not cut grains out of her diet and that rice is fine and quinoa should be eaten too. EVEN IF THOSE TWO THINGS CAUSE ALMOST IMMEDIATE DISTRESS??

He practically accused her of doctor shopping... okay, he said, she's lost weight (like 25 lbs. in 3 months), but she's being too dramatic, he said. Damn good thing I wasn't with her... I'd have kneed him you know where.

Now I understand better why people aren't diagnosed for years and years... and WHO wants to be crapping 10 times a day???

In my own research on this (awesome) board, I've sent her the contact info for Dr. Char Glenn in Portland, who seems to be a really good doctor. Other than that... I want her to fly to NYC to see Dr. Green!!

Whew... rant over. I feel better... thanks!

[Bobbijo6681]

It is funny that her dr told her NOT to research it....Mine diagnosed me and told me to check out the internet and come back with questions. It is a very frustrating process when they won't listen. I have had the same problem.

Good Luck to your daughter!!

[Gemini]

My 27-year-old daughter was diagnosed by endoscopy biopsy last fall (I was diagnosed about 9 years ago and her older sister about 5 years ago). Her symptoms were the usual in our family... severe GI distress, etc., but hers have escalated dramatically to include mouth ulcers, skin rashes, and other things. She's cut dairy and grains out of her diet and is living on about 3-4 kinds of protein (turkey, chicken, shrimp) and about 5 veggies. One doctor thought she might have interstitial cystitis, so she cut out all the foods that make that worse. Her primary care doc sent her to an allergist and everything except the obvious gluten issues came up negative. She was sent back to her GI doc who had her in tears.

When he found out she'd been doing internet research (and who doesn't when they're trying to figure out what the heck is going on???) he said, "Oh great... you've been doing internet research. Why don't YOU tell ME what you have??" DD burst into tears and said she's just trying to learn more! She'd actually wondered if she wasn't suffering leaky gut... she seems to have all the symptoms people have listed there.

He told her she should not cut grains out of her diet and that rice is fine and quinoa should be eaten too. EVEN IF THOSE TWO THINGS CAUSE ALMOST IMMEDIATE DISTRESS??

He practically accused her of doctor shopping... okay, he said, she's lost weight (like 25 lbs. in 3 months), but she's being too dramatic, he said. Damn good thing I wasn't with her... I'd have kneed him you know where.

Now I understand better why people aren't diagnosed for years and years... and WHO wants to be crapping 10 times a day???

In my own research on this (awesome) board, I've sent her the contact info for Dr. Char Glenn in Portland, who seems to be a really good doctor. Other than that... I want her to fly to NYC to see Dr. Green!!

Whew... rant over. I feel better... thanks!

I can totally relate to your daughter's experience and this is the reason it took me 20+ years to be diagnosed. I stopped going to doctors for 10 years....completely, except for my awesome thyroid doc because they were such ignorant A-holes. The last doctor, although very kind with his words, told me to seek counseling because he could find nothing wrong physically with me so it must be psychological in nature. So......guess who diagnosed me? I did, after researching on-line for stomach disorders! I then went to my thyroid physician who did the blood work I asked her to. By then, I was down to 97 pounds and very, very ill.

I am so sorry your daughter had to experience this but many doctors are totally petrified of the internet because patients are actually self educating themselves and beginning to realize how incompetent some doctors are. I hope your daughter can get to the bottom of her food issues soon and feel better. Tell her to go with her gut instincts and if a certain food bothers her, don't eat it....regardless of what a doctor might say. I don't eat a lot of carbs myself and it can be a problem....I have trouble maintaining my weight and making the weight chart if I slack off on them too much.

Take her to see Dr. Green!

[tarnalberry]

If a doctor "accused" me of doctor shopping, I would find the only appropriate response to be "yeah, damn right I'm doctor shopping. why should I pay for crappy service when I can get better? are you going to provide that better service or do I need to find someone else?". And no, I'm not kidding. If they don't want to be a SERVICE PROVIDER then I'll find someone who does.

[sandsurfgirl]

That doctor sounds like an egomaniacal psychopath. I hate hearing stories like this because it brings up my own anger at doctors telling me stuff like that.

Guess what egomaniac doctors? The internet is here to stay and patients aren't going to take your crap anymore.

My mother in law is an allergist and she has that attitude. She told me that is somebody brings in an article they read, she says "Do you want an article to diagnose your or me the doctor to do it?" I got pissed when she said that but I didn't argue with her. She is a good doctor and knowledgable and she's retiring soon anyway.

[T.H.]

Has she come across 'fructose Malabsorption' in her research?

I only just found this recently, but it's not something almost ANY doctors in the US ever look for. In Australia, though (I'm in the US, but I've been researching, too. :-) ), they are finding that 35-45% of people with gut symptoms have mild to severe fructose malabsorption. It's not genetic, but celiac disease is one of the conditions they believe may cause it.

It's not just fruit, which is what I first thought, hearing it. The fructose that causes the issue is in various whole grains, veggies, fruits, sweeteners, all sorts of things, so it feels like EVERYTHING is causing problems, from what I read.

Sounds like your poor daughter might be a good candidate for it!

Here's a link on it that was helpful to me, if you think it might be useful:

Open Original Shared Link

good news is that the diagnostic test for it is non-invasive - a breath test after fasting and then consuming a fructose solution, I believe.

Good luck you your daughter! And a big fat smack to the head for that idiot doctor. That one deserves a kick in the butt. >:-(

My 27-year-old daughter was diagnosed by endoscopy biopsy last fall (I was diagnosed about 9 years ago and her older sister about 5 years ago). Her symptoms were the usual in our family... severe GI distress, etc., but hers have escalated dramatically to include mouth ulcers, skin rashes, and other things. She's cut dairy and grains out of her diet and is living on about 3-4 kinds of protein (turkey, chicken, shrimp) and about 5 veggies. One doctor thought she might have interstitial cystitis, so she cut out all the foods that make that worse. Her primary care doc sent her to an allergist and everything except the obvious gluten issues came up negative. She was sent back to her GI doc who had her in tears.

When he found out she'd been doing internet research (and who doesn't when they're trying to figure out what the heck is going on???) he said, "Oh great... you've been doing internet research. Why don't YOU tell ME what you have??" DD burst into tears and said she's just trying to learn more! She'd actually wondered if she wasn't suffering leaky gut... she seems to have all the symptoms people have listed there.

He told her she should not cut grains out of her diet and that rice is fine and quinoa should be eaten too. EVEN IF THOSE TWO THINGS CAUSE ALMOST IMMEDIATE DISTRESS??

He practically accused her of doctor shopping... okay, he said, she's lost weight (like 25 lbs. in 3 months), but she's being too dramatic, he said. Damn good thing I wasn't with her... I'd have kneed him you know where.

Now I understand better why people aren't diagnosed for years and years... and WHO wants to be crapping 10 times a day???

In my own research on this (awesome) board, I've sent her the contact info for Dr. Char Glenn in Portland, who seems to be a really good doctor. Other than that... I want her to fly to NYC to see Dr. Green!!

Whew... rant over. I feel better... thanks!

[CHARBEEGOOD]

I too am sorry to hear how frustrating your daughter's experience has been. Unfortunately as you have heard many of us experience similar issues.

Extreme weight loss can be very scary, frustrating not only for her but for you as well. There is no quick fix but once she and you 'find the source' it is manageable.

If you haven't tried this yet break up her meals into smaller ones. So instead of eating 3 meals with maybe 2 snacks a day, have 5 small meals packed with protein. Try buying organic veggies and free range proteins. (You may already have gone this route) Your daughter may have more than just 1 issue. Sometimes going back to "nature" less chemicals, and commercially made products can be the answer.

Char

[luvs2eat]

I really appreciate your replies!

Ha ha... I was so mad and upset when I wrote my post... it wasn't till later that I noticed the spelling in my "subject." I meant to say that "I can now SOOO appreciate the frustration celiac's feel."

She is actually eating more frequent, smaller meals in an effort to keep some food in her empty tummy and I believe the only flavoring she's used is a little garlic, so the fructose thing won't be an issue. She's been eating this way for going on 3 months and finding no relief and developing even more symptoms!

She saw her primary care doc yesterday and I told her to ask about Dr. Glenn in Portland. I'm just horrified at the dismissive way her GI doc treated her. She's only looking for answers! She's very unafraid of embracing a gluten-free lifestyle... she loves to cook and is totally psyched to learn new ways. She just wants to FEEL better!!

Thanks again!