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Brandi1969

Celiac newbie frustrated with doctors

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I apologize in advance for the long post.  I am extremely frustrated with my doctors.  A year ago, I saw 3 different doctors for extreme bloat, yellow diarrhea, stomach and back pain. (Also had migraines, chronic fatigue, red splotchy face and brain fog, but didn’t connect them). I told all 3 doctors that I had celiac in my immediate family.  Did ANY of them take blood? NO! Of course not. They all said “stop eating gluten, you probably have a sensitivity “.  Me, not knowing you have to be eating gluten to be tested dutifully did so. One a-hole doctor, looking at my extremely bloated stomach said “you’re fat and you carry your weight like a man, just lose weight”.  Lots of tears after that appointment!  (I was also subjected to thousands of dollars of needless tests for gallbladder etc. but no blood work).  Almost a year later, I had one bite of licorice before I realized the first ingredient was wheat.  I thought,  “I just have a sensitivity, it probably won’t affect me much “. WRONG, I blew up like a balloon, had back and stomach pain and the lovely yellow diarrhea came back. My intestines felt like they were on fire.  So I go back to the original doctor and tell him about this reaction. He says “oh, you definitely have celiac disease”. WHAT?!?  “Let’s run an antibody test” he says.   I tell him I haven’t had a molecule of gluten for a year except for that one bite and have recently learned the test will be negative if I’m not actively eating gluten. I have crappy insurance and I have to pay for the blood work out of pocket, so what’s the point? He says “you might have antibodies, so we’re gonna go ahead and run it”. WTF!  You didn’t think to run the test a year ago when I was so bloated you were flicking my stomach like a watermelon saying “something is very wrong” so I could have an accurate diagnosis? So the doctor says I have it, but I know the test will be negative. So when people ask me if I have celiac I feel like a liar no matter what I say. Not to mention all the money wasted.  I am so frustrated I could cry.  And to add insult to injury, I took my husband out to eat today for his birthday and despite my best efforts got glutened. *sigh*.

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If you were willing to go on gluten for 12 weeks I would give you my spiel on how to order your own blood test for celiac for $300. But I suspect you're not. So I won't :)

You might be interested in purchasing a Nima sensor in order to check your food when you go to restaurants. It is a great tool for attempting to eliminate the gluten in your life. But it's not perfect so if you buy one you should read about it and watch the YouTube videos.

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I have my own embarrassing and frustrating story with a F'ed up dia. I had gluten ataxia, constipation, brain fog fatigue, gut pains, etc. I got extremely looping thought processes from the ataxia that would confuse me and make me angry (snap like Mr. Hyde) topped with pain from distention etc. Was running a bucket list and about 5 doctors in before I started a gluten-free diet and got relief (mother doing frantic research suggested celiac), then I went to the doctors and like you too late for the antibody test. I ate gluten in the office for proof which included motor control loss and vomiting that got me in for a endoscope. I had not been gluten free too long so the damage still showed. I was honestly too embarrassed for years to even admit here that I got the endo scheduled and dia by eating a jack in the box breakfast sandwich in a doctors office for proof of concept lol.

PS check the FindMeGlutenFree app and try to find some 100% dedicated gluten free restaurants or caters for special events and parties. Check reviews by fellow celiacs.  And Ditto on the nima, I found it great for testing sauces, supplements or anything new into my diet or regime.

If you need help finding foods I have a whole list of gluten free options for EVERYTHING.
 

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21 minutes ago, Ennis_TX said:

I ate gluten in the office for proof which included motor control loss and vomiting that got me in for a endoscope. I had not been gluten free too long so the damage still showed. I was honestly too embarrassed for years to even admit here that I got the endo scheduled and dia by eating a jack in the box breakfast sandwich in a doctors office for proof of concept lol.

Lol. I like how you think. 😂

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tessa25, Ennis_TX. Thank you for replying. I will absolutely look into the Nima. I had no idea anything like that existed. Any help, lists, links, you care to share I would greatly appreciate. I try to be vigilant about gluten but I obviously screwed up today. I feel terrible. You’re right Tessa25, I will never put myself through this just for tests. So not worth it. Ennis_TX, i’m Also in N Texas, so if you have any suggestions for restaurants, I’d appreciate it.

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6 hours ago, Brandi1969 said:

tessa25, Ennis_TX. Thank you for replying. I will absolutely look into the Nima. I had no idea anything like that existed. Any help, lists, links, you care to share I would greatly appreciate. I try to be vigilant about gluten but I obviously screwed up today. I feel terrible. You’re right Tessa25, I will never put myself through this just for tests. So not worth it. Ennis_TX, i’m Also in N Texas, so if you have any suggestions for restaurants, I’d appreciate it.

Well I do catering and run a small gluten-free bakery myself in Ennis, heck dream of one of these days getting and running a 100% gluten free food truck. Anyway there are a few dedicated restaurants in Dallas, Across the Pond is a English pub, the owner has 2 celiac children and has a dedicated gluten free kitchen. There used to be a Mexican restaurant owned by a celiac also, but I forget the name. I have 2 places I trust and tried in San Antonio, but for the most part I cook for myself now days.

Oh if you drink the Austin Ciders here in Texas work for a beer replacement. But here is a list of other foods, I update a new list quarterly. https://www.celiac.com/forums/topic/121802-gluten-free-food-alternative-list-2018-q3/

 

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Hi Brandi,

Unfortunately your diagnosis story is not real unusual.  Most celiacs are undiagnosed today.  The testing isn't perfect but the bigger problem is doctors don't bother to test people.  Or they test people wrong, after telling them to go gluten-free.

What's scary is that most people with celiac disease don't even have GI symptoms.  But they may have other symptoms like skin rash, or trouble walking, or thyroid problems, hair loss, insomnia, etc or no symptoms at all.   These people can go years without a doctor figuring out their real issue is celiac disease.

I agree with your thinking to skip the gluten challenge now.  Sometimes people take a long time to recover from a 12 week gluten challenge.  And the result is you get to go gluten-free, which you can do anyway.

You might find peppermint tea helps with bloating.  Also Pepto Bismol can help soothe the gut.

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3 hours ago, Ennis_TX said:

Well I do catering and run a small gluten-free bakery myself in Ennis, heck dream of one of these days getting and running a 100% gluten free food truck. Anyway there are a few dedicated restaurants in Dallas, Across the Pond is a English pub, the owner has 2 celiac children and has a dedicated gluten free kitchen. There used to be a Mexican restaurant owned by a celiac also, but I forget the name. I have 2 places I trust and tried in San Antonio, but for the most part I cook for myself now days.

Oh if you drink the Austin Ciders here in Texas work for a beer replacement. But here is a list of other foods, I update a new list quarterly. https://www.celiac.com/forums/topic/121802-gluten-free-food-alternative-list-2018-q3/

 

Thank you SO much!  If you ship any of your baked goods as far as Granbury, please let me know. Good luck with getting into the food truck business. We need you!

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1 hour ago, GFinDC said:

Hi Brandi,

Unfortunately your diagnosis story is not real unusual.  Most celiacs are undiagnosed today.  The testing isn't perfect but the bigger problem is doctors don't bother to test people.  Or they test people wrong, after telling them to go gluten-free.

What's scary is that most people with celiac disease don't even have GI symptoms.  But they may have other symptoms like skin rash, or trouble walking, or thyroid problems, hair loss, insomnia, etc or no symptoms at all.   These people can go years without a doctor figuring out their real issue is celiac disease.

I agree with your thinking to skip the gluten challenge now.  Sometimes people take a long time to recover from a 12 week gluten challenge.  And the result is you get to go gluten-free, which you can do anyway.

You might find peppermint tea helps with bloating.  Also Pepto Bismol can help soothe the gut.

Interesting you say that. I was diagnosed with hashimotos thyroiditis several years ago before and GI symptoms cropped up. Later severe acid reflux caused me to have major surgery to control it.  Now I am wondering if it’s been celiac all along.  I’ll try the tea and pepto. My bloating is so severe and seems to only subside a little being gluten-free. Thanks so much for the help.

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10 hours ago, Brandi1969 said:

Interesting you say that. I was diagnosed with hashimotos thyroiditis several years ago before and GI symptoms cropped up. Later severe acid reflux caused me to have major surgery to control it.  Now I am wondering if it’s been celiac all along.  I’ll try the tea and pepto. My bloating is so severe and seems to only subside a little being gluten-free. Thanks so much for the help.

There have been several people with hashimoto's thyroiditis on the forum.  It is one of the conditions associated with celiac disease that we have a higher than average chance of getting.

Bloating can be made worse by eating sugary and carby foods, or dairy.  So maybe cut those out for a while and see if things improve.  Simple whole foods like meats, veggies, nuts and eggs are safer.  Carby foods (rice, bread, potatoes etc) are converted to sugars in the gut and feed bacteria that cause gas.  When our guts are irritated the bacteria get going pretty fast and meanwhile our digestive system isn't working right.  So bloating happens pretty easily.

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29 minutes ago, GFinDC said:

There have been several people with hashimoto's thyroiditis on the forum.  It is one of the conditions associated with celiac disease that we have a higher than average chance of getting.

Bloating can be made worse by eating sugary and carby foods, or dairy.  So maybe cut those out for a while and see if things improve.  Simple whole foods like meats, veggies, nuts and eggs are safer.  Carby foods (rice, bread, potatoes etc) are converted to sugars in the gut and feed bacteria that cause gas.  When our guts are irritated the bacteria get going pretty fast and meanwhile our digestive system isn't working right.  So bloating happens pretty easily.

SO basically i need to go low carb to get rid of this bloat and terrible gas. That makes sense.  Even though my other symptoms are so much better with no gluten, the bloat/gas hasn’t really improved at all. Thanks for the info. I hadn’t thought bacteria was the problem.

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Read the Newbie 101 which is pinned to the top of the Coping section. There are oodles of tips there.

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On 7/12/2018 at 8:41 PM, Brandi1969 said:

SO basically i need to go low carb to get rid of this bloat and terrible gas. That makes sense.  Even though my other symptoms are so much better with no gluten, the bloat/gas hasn’t really improved at all. Thanks for the info. I hadn’t thought bacteria was the problem.

Hi Brandi,

Yes, that's the ticket.  Eliminate the easy to eat bacteria foods that they love to consume.  Normally when our digestive system is working right we don't have huge problems with those foods.  But when things are out of whack due to celiac damage all bets are off.

The other big potential problem food is all milk. There is an enzyme made by the villi lining the small intestine that breaks down milk sugar.  When those villi are damaged, the enzyme is missing and the sugar (lactose) becomes bacteria food.   So it is often a good idea to skip dairy for the first few months of the gluten-free diet.  If things go well, the villi will begin to heal and start making the dairy enzyme (lactase) again.

You may be able to eat hard cheese though as most of the lactose is already broken down by the cheese making process.

Edited by GFinDC

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Sorry to hear you're dealing with all that... I have a similar story with some different symptoms. So many doctors either don't know much about Celiac/gluten intolerance and are trying to keep up the authoritative facade, or just have their mental database of similar lists of symptoms with different labels.

Despite my obvious and quick reactions to gluten and soy, for example... I've had doctors suppose I have an STD, accuse me of hypochondria and chuckle, tell me I'm just getting old, etc...

With the whole gluten free thing being more popular and mainstream now, hopefully some of the medical school graduates of more recent times will make it their business to better understand Celiac, and food intolerances/allergies of various kinds. As you said, the symptoms are miserable, I think I would describe it in their terms as having the flu and a cold and bipolar disorder all at the same time, when I first had the reactions that alerted me to the possibility that I no longer tolerate gluten or soy.

Anyway, best wishes to you getting through this bs. Hopefully karma is a thing and I mean, you were taking your husband out for his birthday... not drunkenly chomping on a slice of pizza by your own choices leading to impaired judgments. But even if that were the case, no one deserves to suffer these things.

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21 hours ago, GFinDC said:

Hi Brandi,

Yes, that's the ticket.  Eliminate the easy to eat bacteria foods that they love to consume.  Normally when our digestive system is working right we don't have huge problems with those foods.  But when things are out of whack due to celiac damage all bets are off.

The other big potential problem food is all milk. There is an enzyme made by the villi lining the small intestine that breaks down milk sugar.  When those villi are damaged, the enzyme is missing and the sugar (lactose) becomes bacteria food.   So it is often a good idea to skip dairy for the first few months of the gluten-free diet.  If things go well, the villi will begin to heal and start making the dairy enzyme (lactase) again.

You may be able to eat hard cheese though as most of the lactose is already broken down by the cheese making process.

Yeah, dairy is definitely not my friend. I seem to be able of handle a little mozzarella cheese, but milk, ice cream etc. are no go.

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8 hours ago, Brogrammer said:

Sorry to hear you're dealing with all that... I have a similar story with some different symptoms. So many doctors either don't know much about Celiac/gluten intolerance and are trying to keep up the authoritative facade, or just have their mental database of similar lists of symptoms with different labels.

Despite my obvious and quick reactions to gluten and soy, for example... I've had doctors suppose I have an STD, accuse me of hypochondria and chuckle, tell me I'm just getting old, etc...

With the whole gluten free thing being more popular and mainstream now, hopefully some of the medical school graduates of more recent times will make it their business to better understand Celiac, and food intolerances/allergies of various kinds. As you said, the symptoms are miserable, I think I would describe it in their terms as having the flu and a cold and bipolar disorder all at the same time, when I first had the reactions that alerted me to the possibility that I no longer tolerate gluten or soy.

Anyway, best wishes to you getting through this bs. Hopefully karma is a thing and I mean, you were taking your husband out for his birthday... not drunkenly chomping on a slice of pizza by your own choices leading to impaired judgments. But even if that were the case, no one deserves to suffer these things.

Wow, I hate that your doctor treated so badly.  Here’s hoping you’re right about karma.  I feel like many doctors have a god complex. Its like they thought I was stupid and due to my lack of a medical degree, couldn’t possibly know that something was actually wrong with my body. I am just so tired of being patronized. We shouldn’t dread going to the doctors who took an oath to help us.

23 hours ago, squirmingitch said:

Read the Newbie 101 which is pinned to the top of the Coping section. There are oodles of tips there.

Will do, thanks for the info. 🙂

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