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Celiac newbie frustrated with doctors


Brandi1969

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Brandi1969 Apprentice

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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tessa25 Rising Star

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.

Ennis-TX Grand Master

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.
 

tessa25 Rising Star
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. ?

Brandi1969 Apprentice

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.

Ennis-TX Grand Master
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/

 

GFinDC Veteran

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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Brandi1969 Apprentice
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!

Brandi1969 Apprentice
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.

GFinDC Veteran
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.

Brandi1969 Apprentice
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.

squirmingitch Veteran

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

GFinDC Veteran
(edited)
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
Brogrammer Apprentice

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.

Brandi1969 Apprentice
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.

Brandi1969 Apprentice
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. ?

Susie0612 Newbie

Hi Brandi,  

I totally understand where you're coming from. I was just received my diagnosis a couple days ago and honestly, while it's a relief to finally know what's going on...it was an uphill battle to reach this point. Looking back at all the symptoms I have, I've had a lot of them since I was 11 or 12 (I'm 33 now) and every doctor just brushed them off as something else. It's taken me way too long, but somewhere in the last few months I remembered I had a voice lol...by that I simply mean that I started being very vocal about how I was feeling and what I wanted next (ie...celiac testing). Before I basically demanded celiac blood work, my primary care doc (who I've seen for the last 6 years, with the same symptoms each time) looked at me this last time, and told me I needed to lose weight because that would fix my problems. He told me that a lot of times people see gluten free as a trend to lose weight and it doesn't work like that and instead told me to exercise more instead of doing the latest trends. He then proceeded to tell me that since I'd been reading thru the list of possible symptoms, some of them may just be in my head. We sat in awkward silence for about 5 minutes while he typed out notes on the computer, then he turned to me and told me he was going to write me a prescription for anti depressants ?. I lost it with him after that...I told him I didn't want/need anti depressants, I wanted/needed to know what was going on with my body and then told I wasn't leaving the exam room until I had an order for celiac testing. When that wasn't enough to get him to take me seriously I asked for a referral to a gastroenterologist. Fast forward to my first appointment with the gastroenterologist, he went thru my symptoms and he looked at me and said "So, you either have a really bad case of non-celiac gluten sensitivity or you actually have celiac. Either way gluten is not your friend, you need to quit eating it." He ordered testing just to be sure and when he gave me my results, he said it was pretty much the results he expected; I have celiac and that I needed to stay clear of all gluten. Honestly, I think I was actually excited to have the diagnosis, I know it's going to be a challenge to adjust to at first, but I'm glad to know what's going on. I only wish it hadn't taken my so many years and one very useless primary care doctor to find out.... 

Brandi1969 Apprentice
4 hours ago, Susie0612 said:

Hi Brandi,  

I totally understand where you're coming from. I was just received my diagnosis a couple days ago and honestly, while it's a relief to finally know what's going on...it was an uphill battle to reach this point. Looking back at all the symptoms I have, I've had a lot of them since I was 11 or 12 (I'm 33 now) and every doctor just brushed them off as something else. It's taken me way too long, but somewhere in the last few months I remembered I had a voice lol...by that I simply mean that I started being very vocal about how I was feeling and what I wanted next (ie...celiac testing). Before I basically demanded celiac blood work, my primary care doc (who I've seen for the last 6 years, with the same symptoms each time) looked at me this last time, and told me I needed to lose weight because that would fix my problems. He told me that a lot of times people see gluten free as a trend to lose weight and it doesn't work like that and instead told me to exercise more instead of doing the latest trends. He then proceeded to tell me that since I'd been reading thru the list of possible symptoms, some of them may just be in my head. We sat in awkward silence for about 5 minutes while he typed out notes on the computer, then he turned to me and told me he was going to write me a prescription for anti depressants ?. I lost it with him after that...I told him I didn't want/need anti depressants, I wanted/needed to know what was going on with my body and then told I wasn't leaving the exam room until I had an order for celiac testing. When that wasn't enough to get him to take me seriously I asked for a referral to a gastroenterologist. Fast forward to my first appointment with the gastroenterologist, he went thru my symptoms and he looked at me and said "So, you either have a really bad case of non-celiac gluten sensitivity or you actually have celiac. Either way gluten is not your friend, you need to quit eating it." He ordered testing just to be sure and when he gave me my results, he said it was pretty much the results he expected; I have celiac and that I needed to stay clear of all gluten. Honestly, I think I was actually excited to have the diagnosis, I know it's going to be a challenge to adjust to at first, but I'm glad to know what's going on. I only wish it hadn't taken my so many years and one very useless primary care doctor to find out.... 

Wow.  Thank you for sharing sharing your story.  So how sad is it that my initial instinct was to congratulate you on your diagnosis!  Of course they wanted to give you antidepressants. Honestly I think doctors think if they give us happy pills, we’ll just go away. I hate that you’ve suffered so long with this, but I really am thrilled you know definitively what’s wrong and what to do about it. Good for you for being so vocal. Honestly I wish I had understood how important it was to be tested while eating gluten.  I would have insisted on it, instead of letting the doctor insult me and treat me  like a fat, crazy, hypochondriac.

squirmingitch Veteran
6 hours ago, Susie0612 said:

Hi Brandi,  

I totally understand where you're coming from. I was just received my diagnosis a couple days ago and honestly, while it's a relief to finally know what's going on...it was an uphill battle to reach this point. Looking back at all the symptoms I have, I've had a lot of them since I was 11 or 12 (I'm 33 now) and every doctor just brushed them off as something else. It's taken me way too long, but somewhere in the last few months I remembered I had a voice lol...by that I simply mean that I started being very vocal about how I was feeling and what I wanted next (ie...celiac testing). Before I basically demanded celiac blood work, my primary care doc (who I've seen for the last 6 years, with the same symptoms each time) looked at me this last time, and told me I needed to lose weight because that would fix my problems. He told me that a lot of times people see gluten free as a trend to lose weight and it doesn't work like that and instead told me to exercise more instead of doing the latest trends. He then proceeded to tell me that since I'd been reading thru the list of possible symptoms, some of them may just be in my head. We sat in awkward silence for about 5 minutes while he typed out notes on the computer, then he turned to me and told me he was going to write me a prescription for anti depressants ?. I lost it with him after that...I told him I didn't want/need anti depressants, I wanted/needed to know what was going on with my body and then told I wasn't leaving the exam room until I had an order for celiac testing. When that wasn't enough to get him to take me seriously I asked for a referral to a gastroenterologist. Fast forward to my first appointment with the gastroenterologist, he went thru my symptoms and he looked at me and said "So, you either have a really bad case of non-celiac gluten sensitivity or you actually have celiac. Either way gluten is not your friend, you need to quit eating it." He ordered testing just to be sure and when he gave me my results, he said it was pretty much the results he expected; I have celiac and that I needed to stay clear of all gluten. Honestly, I think I was actually excited to have the diagnosis, I know it's going to be a challenge to adjust to at first, but I'm glad to know what's going on. I only wish it hadn't taken my so many years and one very useless primary care doctor to find out.... 

Susie, why don't you send that primary care doc a copy of your positive celiac panel along with the notes from your gastro dx'ing you with celiac -- or better yet, make an appt. with him & hand them to him in person. Maybe he'll learn something.

To all of you --- the things you're saying and what you're being told by the docs who brush you off, blame your weight & want to put you on happy pills..... I wish I had a penny for every instance of that kind of treatment we've heard about. 

Susie0612 Newbie
5 hours ago, Brandi1969 said:

Wow.  Thank you for sharing sharing your story.  So how sad is it that my initial instinct was to congratulate you on your diagnosis!  Of course they wanted to give you antidepressants. Honestly I think doctors think if they give us happy pills, we’ll just go away. I hate that you’ve suffered so long with this, but I really am thrilled you know definitively what’s wrong and what to do about it. Good for you for being so vocal. Honestly I wish I had understood how important it was to be tested while eating gluten.  I would have insisted on it, instead of letting the doctor insult me and treat me  like a fat, crazy, hypochondriac.

Haha not sad at all that you wanted to congratulate me on the diagnosis...as odd as it sounds, I was thrilled lol, I finally had answers! I'm sorry you've had to go thru what you've gone thru. Honestly, it took me years to find that voice and be vocal about my care...I always assumed the doctor was right...you know, since they're the doctor and all lol.  The only reason I knew I needed to keep consuming gluten for my testing is because when looking up the symptoms of celiac and testing done for, everything I read kept saying you need to be consuming gluten for the test. If I had stopped eating it before testing, there's no way I would have reintroduced it into my diet, I would have just gone on assuming I had at least a gluten sensitivity and left it at that. But I'm stubborn and I wanted answers. You mentioned licorice being one of your culprits...I used to eat red vines all the time, never looking at what was in them, so I never assumed that they were giving me problems...I was both shocked and sad when I realized I could no longer eat them lol! 

Susie0612 Newbie
4 hours ago, squirmingitch said:

Susie, why don't you send that primary care doc a copy of your positive celiac panel along with the notes from your gastro dx'ing you with celiac -- or better yet, make an appt. with him & hand them to him in person. Maybe he'll learn something.

To all of you --- the things you're saying and what you're being told by the docs who brush you off, blame your weight & want to put you on happy pills..... I wish I had a penny for every instance of that kind of treatment we've heard about. 

That's a good idea! When he was walking out of the exam room I told him that when it came time for him to need a doctor, I hope he got one with more compassion, understanding and a better bed side manner than he had...he just looked at me and walked out ?

As for dealing with blaming my weight and wanting me to be on happy pills, I assumed it was just me that was being told crap like that and that maybe my doctor was right. It wasn't until I stumbled across this site that I realized it wasn't just me dealing with those kinds of comments/crappy care from the doctor. 

Brandi1969 Apprentice
11 hours ago, Susie0612 said:

Haha not sad at all that you wanted to congratulate me on the diagnosis...as odd as it sounds, I was thrilled lol, I finally had answers! I'm sorry you've had to go thru what you've gone thru. Honestly, it took me years to find that voice and be vocal about my care...I always assumed the doctor was right...you know, since they're the doctor and all lol.  The only reason I knew I needed to keep consuming gluten for my testing is because when looking up the symptoms of celiac and testing done for, everything I read kept saying you need to be consuming gluten for the test. If I had stopped eating it before testing, there's no way I would have reintroduced it into my diet, I would have just gone on assuming I had at least a gluten sensitivity and left it at that. But I'm stubborn and I wanted answers. You mentioned licorice being one of your culprits...I used to eat red vines all the time, never looking at what was in them, so I never assumed that they were giving me problems...I was both shocked and sad when I realized I could no longer eat them lol! 

Yep, licorice. Green apple I used to love.  After 10 mos gluten free one bite made me so ill I couldn’t believe it.  It was so bad that I will never touch gluten again. But if it hadn’t happened the word “celiac” would never have come into my doctors consciousness.

Ennis-TX Grand Master

Off topic but on the licorice note....there are several Gluten Free ones. 

Open Original Shared Link
Open Original Shared Link
 

You can order by brand on luckyvitamin.com vitacost.com or amazon

Brandi1969 Apprentice
1 hour ago, Ennis_TX said:

Off topic but on the licorice note....there are several Gluten Free ones. 

Open Original Shared Link
Open Original Shared Link
 

You can order by brand on luckyvitamin.com vitacost.com or amazon

Ennis_TX 

thanks so much!

Susie0612 Newbie
6 hours ago, Ennis_TX said:

Off topic but on the licorice note....there are several Gluten Free ones. 

Open Original Shared Link
Open Original Shared Link
 

You can order by brand on luckyvitamin.com vitacost.com or amazon

Ennis_TX, thanks for this link....you just might be my new favorite person lol! 

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    • knitty kitty
      @catnapt, Wheat germ has very little gluten in it.  Gluten is  the carbohydrate storage protein, what the flour is made from, the fluffy part.  Just like with beans, there's the baby plant that will germinate  ("germ"-inate) if sprouted, and the bean part is the carbohydrate storage protein.   Wheat germ is the baby plant inside a kernel of wheat, and bran is the protective covering of the kernel.   Little to no gluten there.   Large amounts of lectins are in wheat germ and can cause digestive upsets, but not enough Gluten to provoke antibody production in the small intestines. Luckily you still have time to do a proper gluten challenge (10 grams of gluten per day for a minimum of two weeks) before your next appointment when you can be retested.  
    • knitty kitty
      Hello, @asaT, I'm curious to know whether you are taking other B vitamins like Thiamine B1 and Niacin B3.  Malabsorption in Celiac disease affects all the water soluble B vitamins and Vitamin C.  Thiamine and Niacin are required to produce energy for all the homocysteine lowering reactions provided by Folate, Cobalamine and Pyridoxine.   Weight gain with a voracious appetite is something I experienced while malnourished.  It's symptomatic of Thiamine B1 deficiency.   Conversely, some people with thiamine deficiency lose their appetite altogether, and suffer from anorexia.  At different periods on my lifelong journey, I suffered this, too.   When the body doesn't have sufficient thiamine to turn food, especially carbohydrates, into energy (for growth and repair), the body rations what little thiamine it has available, and turns the carbs into fat, and stores it mostly in the abdomen.  Consuming a high carbohydrate diet requires additional thiamine to process the carbs into energy.  Simple carbohydrates (sugar, white rice, etc.) don't contain thiamine, so the body easily depletes its stores of Thiamine processing the carbs into fat.  The digestive system communicates with the brain to keep eating in order to consume more thiamine and other nutrients it's not absorbing.   One can have a subclinical thiamine insufficiency for years.  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function, so the symptoms can wax and wane mysteriously.  Symptoms of Thiamine insufficiency include stunted growth, chronic fatigue, and Gastrointestinal Beriberi (diarrhea, abdominal pain), heart attack, Alzheimer's, stroke, and cancer.   Thiamine improves bone turnover.  Thiamine insufficiency can also affect the thyroid.  The thyroid is important in bone metabolism.  The thyroid also influences hormones, like estrogen and progesterone, and menopause.  Vitamin D, at optimal levels, can act as a hormone and can influence the thyroid, as well as being important to bone health, and regulating the immune system.  Vitamin A is important to bone health, too, and is necessary for intestinal health, as well.   I don't do dairy because I react to Casein, the protein in dairy that resembles gluten and causes a reaction the same as if I'd been exposed to gluten, including high tTg IgA.  I found adding mineral water containing calcium and other minerals helpful in increasing my calcium intake.   Malabsorption of Celiac affects all the vitamins and minerals.  I do hope you'll talk to your doctor and dietician about supplementing all eight B vitamins and the four fat soluble vitamins because they all work together interconnectedly.  
    • Florence Lillian
      Hi Jane: You may want to try the D3 I now take. I have reactions to fillers and many additives. Sports Research, it is based in the USA and I have had no bad reactions with this brand. The D3 does have coconut oil but it is non GMO, it is Gluten free, Soy free, Soybean free and Safflower oil free.  I have a cupboard full of supplements that did not agree with me -  I just keep trying and have finally settled on Sports Research. I take NAKA Women's Multi full spectrum, and have not felt sick after taking 2 capsules per day -  it is a Canadian company. I buy both from Amazon. I wish you well in your searching, I know how discouraging it all is. Florence.  
    • catnapt
      highly unlikely  NOTHING and I mean NOTHING else has ever caused me these kinds of symptoms I have no problem with dates, they are a large part of my diet In fact, I eat a very high fiber, very high vegetable and bean diet and have for many years now. It's considered a whole foods plant based or plant forward diet (I do now eat some lean ground turkey but not much) I was off dairy for years but recently had to add back plain yogurt to meet calcium needs that I am not allowed to get from supplements (I have not had any problem with the yogurt)   I eat almost no processed foods. I don't eat out. almost everything I eat, I cook myself I am going to keep a food diary but to be honest, I already know that it's wheat products and also barley that are the problem, which is why I gradually stopped eating and buying them. When I was eating them, like back in early 2024, when I was in the middle of moving and ate out (always had bread or toast or rolls or a sub or pizza) I felt terrible but at that time was so busy and exhausted that I never stopped to think it was the food. Once I was in my new place, I continued to have bread from time to time and had such horrible joint pain that I was preparing for 2 total knee replacements as well as one hip! The surgery could not go forward as I was (and still am) actively losing calcium from my bones. That problem has yet to be properly diagnosed and treated   anyway over time I realized that I felt better when I stopped eating bread. Back at least 3 yrs ago I noticed that regular pasta made me sick so I switched to brown rice pasta and even though it costs a lot more, I really like it.   so gradually I just stopped buying and eating foods with gluten. I stopped getting raisin bran when I was constipated because it made me bloated and it didn't help the constipation any more (used to be a sure bet that it would in the past)   I made cookies and brownies using beans and rolled oats and dates and tahini and I LOVE them and have zero issues eating those I eat 1 or more cans of beans per day easily can eat a pound of broccoli - no problem! Brussels sprouts the same thing.   so yeh it's bread and related foods that are clearly the problem  there is zero doubt in my mind    
    • cristiana
      Thank you for your post, @nanny marley It is interesting what you say about 'It's OK not to sleep'. Worrying about sleeping only makes it much harder to sleep.  One of my relatives is an insomniac and I am sure that is part of the problem.  Whereas I once had a neighbour who, if she couldn't sleep, would simply get up again, make a cup of tea, read, do a sudoku or some other small task, and then go back to bed when she felt sleepy again.  I can't think it did her any harm - she lived  well into her nineties. Last week I decided to try a Floradix Magnesium supplement which seems to be helping me to sleep better.  It is a liquid magnesium supplement, so easy to take.  It is gluten free (unlike the Floradix iron supplement).  Might be worth a try.        
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