JodyM75

Yes, lifestyle changes helped me a lot.  Not eating big meals after 7:30...not drinking a lot of water or having a lot of soup all at the same time...I think those are my biggest two.  Oh, and I'm 40lb down from my heaviest, that helps.

I have recently had good luck with heartburn control using - don't laugh - an essential oil blend doTERRA produces called DigestZen.  I wasn't expecting much, but two drops in water, drink it down, the heartburn was gone in less than 5 seconds and didn't come back that day.  I used up the sample my friend gave me and bought the whole 15ml bottle.  I'm very surprised.

Hi all,

I was recently diagnosed with barrett's esophagus. I'm wondering if anyone out there has this and celiac that can calm my nerves? Everytime I've googled it, cancer comes up and I'm having panic attacks. . I've been gluten free for several years after a celiac diagnosis. I'm also lactose, soy, corn free. I'm so surprised by this new diagnosis as I rarely have reflux or heartburn.

Yes, they work hard to make it very scary.  Let's be clear here, though.  According to the National Institute of Health, about 1.5-7 people out of one hundred have Barrett's Esophagus, and the risk of them getting Esophageal cancer is .5%.  That's it.  That's pretty low.

If your diagnoses was just visual it does not count.  You can only get diagnosed via biopsy.  My previous GI diagnosed me with Barrett's without a biopsy, and when I found out that was a no-no, I switched doctors, got the biopsy and it came back negative.  For several years my mother was terrified about the cancer risk for no reason.

Keep in mind....a lot of this is the PPI and H2 drug manufacturer's pushing the fear....

I have had a hiatal hernia since I was 17 with really bad reflux if left untreated (I do take a PPI, but am weaning off because I don't want the eventual side effects).  I went unmedicated for 9 years.  Total, I've had this problem for 23 years and I'm frankly surprised I DON'T have Barrett's.  Going off gluten didn't help me, either.

I had a biopsy done when I was going in for a routine EGD (I have a hiatal hernia and get these every 5 years).  The results came back with mild to moderate damage consistent with celiac.

I had blood tests two weeks later that were normal, no antibodies.  Is your son currently eating gluten?  You need to be on a gluten diet for the bloodtests to mean anything.

You need ot make sure, though, they are sending you for the right test.  My doctor originally gave me a bloodwork form to check for lupus!  The test came back negative for lupus, but I had to request the correct bloodwork form and then fight not to pay for the one done in error.  Good luck!

So, I've got this wonderful thing going on where I can get to sleep fine, thank you very much, but I wake up in the middle of the night and I'm up.  Every. Night.  Doc originally put me on Ambien, which helped one night.  Then she switched me to Ambien extended release.  Same thing.

I've been taking Lunesta 3mg for 5 nights.  Worked the first night, waking up at 3am since then.

The fact that these meds aren't touching this problem really concerns me.  The docs seem concerned, too, but just keep switching me around.

I am also taking melatonin extended release.  Helps me get to sleep, but nothing much in the middle of the night.  I've even tried waiting unitl I wake up at 3 and taking it then, but it doesn't help me get back to sleep.  I also get outside in the sunlight every day for at least 15 minutes.

They also sent me to a local lung/sleep doctor, who taught me meditation/yoga breathing.  I already knew yoga breathing.  I did give it a try, though.  He wanted me to get up at 5 am and breath for an hour and 20 minutes every morning.  As much as I believe in preventative medicine and alternative therapies, I was resentful every time I did this and decided to stop.  And, frankly, I have a hard time justifying paying a specialist to teach me meditation breathing.

Three months of this is a long time, and I do recognize my stress and anger when I initially wake up is probably half the problem.  I don't know how to break this cycle, though. 

I have had this happen before, years ago, but it wasn't this bad and didn't go on for this long, but Tylenol PM helped then.  Does anyone have any suggestions? 

I should also note that I've decided to switch from my current PCP to an Internal Medicine office nearby, because I really don't like the "pat me on my little head and send me on my way" bedside manner of my current doc.  I haven't for a long time, but this last time really set me off.

All right, everyone.....I may have written that Newbie 101 thread and I stand by all the info in it, but I never wrote a single sentence proclaiming: you can't eat at someone's house.

Because I do not believe that.

 

This is how you survive Thanksgiving at someone's house:

 

(1)My friend is making an unstuffed turkey in a silver foil pan I gave her ($2.50)with a new baster. ($1.29)

I insist on new basters because I was "glutened by baster" my first THX (long story about two turkeys--1 stuffed, 1 not and a sister who thought it was ok to baste them both with 1 baster)

and I have "issues" with those damn things.

Anyway, no gluten involved in turkey. I still have NEVER seen a turkey with gluten in it, despite what some people have posted here in the past.

(2) She makes the roasted root veggies, but we slice and dice together while we chatter away drinking champagne.

We cut them on flexible cutting boards I bring her . they can be found in a variety of places, and they look like this:

 

Open Original Shared Link

 

(3) I make the gravy with some G F flour I bring using the pan drippings that have never been near any gluten..

(4) I bring G F stuffing made in a crockpot that everyone loves.  No gluten.

 

recipe here: Open Original Shared Link

 

(5) We make a cheese, pate and veggie platter with Crunchmaster crackers for appetizers. No gluten.

(6) we have a shrimp cocktail platter. No gluten.

(7) she makes her family recipe of cranberry-orange relish. No gluten involved. I have watched her make it a dozen times.

(8) She makes a green bean casserole the day before Thanksgiving. I can't eat it and I do not care anyway. Never liked it. Even if it is passed around the table,

it's not going to miraculously gluten me.

(9) I bring the desserts because I am the one who makes them the best 

 

Flourless chocolate cake with ganache

 

recipe here:

Open Original Shared Link

 

and 

Pumpkin cheesecake with pecan/gingersnap crust

 

recipe here

Open Original Shared Link

 

(10) select a nice wine for dinner and one for dessert.

 

This does not have to be the end of the world. It just takes common sense, planning and it requires some assistance and understanding from the hostess,. But unless you are going to be cooking (which I normally do), you need to do a bit of advanced prep, but you can dine at someone's home and be perfectly fine. I have done it many times.

 

I am very sensitive to trace gluten, but I can assure you, I will not be dining outside or in another room. I eat at the table with everyone else. There's no reason celiacs can't enjoy dinner with friends and family. It just takes a few steps of precaution and an understanding hostess. 

 

If you do not feel up to this task just yet, and that is understandable when you are newly diagnosed, then just bring your own dinner and go and enjoy your relatives. If they keep pestering you about why, just say this:

 

MY DOCTOR SAID I HAVE TO EAT THIS WAY RIGHT NOW SO I CAN GET WELL.

leave it at that. All older relatives will get "MY DOCTOR SAID"

 

Don't spend your time defending, explaining or being upset. Later, you can mail them all an explanation of celiac and what it takes

to be truly gluten-free and they can read it and learn about it and maybe talk with you about it..

 

Don't avoid seeing family members --they love you and you love them!-- and you can use their loving support right now.

 

Cheers, IH

 

PS>>and now, I am going to make this post its own thread so I do not have to write this mother of a post all over again. 

This is so incredibly helpful and positive, thank you!  I'm coming up on my first holiday season after diagnosis.  I've been dreading it, but this really helps!  I'm off to look up other holiday posts on here.

Thanks for the recipes, too!

This is what helped me to get  some additional energy just after 2 weeks:

 

1. Zinc

2. Magnesium

3. Selenium

4. Vit D

5. Swedish Bitters

 

Good luck!

I'm curious:  Swedish Bitters for energy? 

The Gluten Dude did a post on kitchen "safety":  Open Original Shared Link

It's interesting to see how others handle the issue.

I was spending so much time and energy stressing myself out trying to find the perfect gluten-free bread, rolls, treats, crackers, etc., that I gave up and went grain free.  I went Paleo and took out grains and veggie oil, too, but not dairy (yet).  I'm happier for it!

If you hurry and follow up fast, the lab may still have the vials of blood and they can do the correct test.  I was told my lab keeps the vials for at least 3 days. 

For those of you who don't eat soy....why?  What were your symptoms?  What are your symptoms if you've been "soy'ed?"  I'm trying to figure out if I need to drop soy as well....many thanks!

I have been on prescription Prilosec/Nexium/Generic for over 15 years.  I was on 20mg 1xday, then 40mg, then back to 20, then 20mg twice a day.  I have a hiatal hernia that causes bad heartburn no matter what I eat, etc, so mine is a plumbing problem and not (necessarily) a food issue.

In June 2013 my dose had been upped to 20mg twice a day.  I had known for some time that this med caused some side effects and in September 2013 I decided to start weaning myself off.  The kind I get is a capsule with little white balls inside.  I know there are other kinds.  Anyway, I opened one up and counted the balls: 18.  I started by taking one ball out, so I was taking a dose with 17 little balls.  I did that for two weeks (17 little balls twice a day).  After two weeks, I bumped down to 16 balls.  I kept that pace up until I was at a half-dose in January, and I've been there ever since. 

This dose is working fine for me, I haven't really had any breakthrough hearburn.  I will try to continue weaning myself down.  I did this without telling my doctors I was going to do it BUT I have told them since then.  Everyone is fine with it.  My GI does NOT want me to go lower with my dose but, hey, if I can.....I will. 

I was given carafate at one point (when they thought I had an ulcer...I didn't) and it made me nauseous.  They told me to stop taking it.

The kicker is with PPIs or H2 blockers that you can't stop cold turkey.  If you do, the acid comes back WAY worse.  Your stomach knows its supposed to be producing acid, it knows for some reason it isn't making enough, so it produces more acid producers.  SO, when you stop taking it cold turkey, you get a real whammy.  It's called Acid Rebound; there's oodles of info on the web about it.

Without delving into the medical history of the OP, people can have Celiac disease with no symptoms with exposure to gluten.  The intestinal damage is still happening. I am one of them, and it is commonly referred to as a "Silent Celiac"... Open Original Shared Link.   That is why proper testing is so important to have when there are inconclusive symptoms.

Me, too!  I feel very lucky, but it is also incredibly frustrating because I have no idea if I'm being strict enough or not.  I guess I won't know for sure until I get another endoscopy.  My bloodwork was normal. 

It's funny, I just did a search for "tea" and it told me there were no results in the forums!  Go figure!

My husband have a huge HUGE tea stash at our house, all kind of brands and flavors.  I haven't had tea since my diagnosis but winter is coming.  What should I look for on the labels?  Any brands I should be especially wary of?  Where is the hidden gluten in tea?

Thanks everyone!

Someone asked me recently about shared cooking utensils, and I feel like I've heard conflicting information lately about these materials in particular. Let's set the record straight?

Are plastic utensils okay to use for both gluten-containing foods and gluten-free foods if they are washed in between uses?

How about Tupperware? I know scratched Tupperware can retain gluten.

 

Rats, I hadn't thought of the tupperware....*sigh*

Stoneware is still on the "replace" list, right?

I agree-I think better diagnosis is the root behind the "increase".  Like most diseases and conditions, often in the past it went undiagnosed or lumped into a general category.  Also keep in mind that people didn't live as long so many diseases/conditions just didn't appear or were not as severe as to be noticed.  100 years ago I probably wouldn't have been diagnosed with Celiac because I probably would have been dead before my symptoms became bothersome.

I agree about the increase and the longer life span, too.  I also think women are more likely to be diagnosed with AI diseases because...women go to the doctor more? 

I didn't know that about modern bread flours having more gluten in them, that's interesting.  I did know modern bakers still use yeast (that was the main thing that told me this guy didn't know what he was talking about).

 

Right off the bat I can tell you the low platelets may be influenced by celiac, however, my levels were at their lowest while I was taking the PPIs.

In fact, if you look at the warning page they give you or just search for "low platelets proton pump inhibitor" you'll catch it one of the more "common" uncommon side effects is low platelet count from regular use of ppis.

 

 

 

This is very, very interesting to me as I've been on PPIs for about 25 years.  They upped my dose a year and a half ago to 20mg x2 a day, and I've successfully weaned myself down to 10mg x2 a day.  The more I read about them, the more I want off.  I'll have to search for more info on this, thanks!

So, I was just at a family gathering and got an earfull, and I was wondering if anyone else had heard this one before.

I got into a conversation with a cousin (2nd cousin or so) about having celiac.  He told me one of his sons also can't have gluten, although he didn't say if it was celiac, allergy, etc. 

He then told me his theory that the modern way they make bread rise - by using chemicals rather than yeast - is part of the cause behind so many gluten issues today.  I mean, (he said), there has to be a connection, right?  They used to use yeast, they don't anymore, and now more and more people have problems with gluten.

I know this is bunk, but I was wondering if anyone had heard this theory before. 

I had considered perimenopause, but it seems to be another thing that has no clear answer and no clear....well, treatment is the wrong word, but you knwo what I mean.  I did not know it could come earlier for those with celiac.  I'll do a search.  My mother went through menopause around 48, so I'm less than 10 years out from that.  It's very conceivable.

I'm just so frustrated and maybe I'm grasping at straws, but as the saying goes I'm sick and tired of being sick and tired.  I don't feel sick, but I'm sure making up for it with the "tired" part! 

Thank you for answering my questions and putting in your $.02.  I truly appreciate it.  LOVE the comment about the victory dance!!

For more information on an elimination diet specific for autoimmune issues, check out The Paleo Mom.  I haven't done it, but I know people who have and it worked wonders.

Based on your comment about the flare-up after your ice cream binge (  ), I wonder how you would do by eliminating dairy?

LOTS of questions about hypothyroidism and Hashimotos.  This might be long…..sorry...

My mother is hypothyroid and has been taking a replacement for it for at least 15 years (she is 72).  I don’t know the name of it, sorry.  Her dose has been adjusted downward a few times.  As far as I know, she has only had her TSH tested.  I’m almost positive my mom has Hashis but was never diagnosed.  I’m also almost positive she has celiac (she’s had D for years, bloating, gas, etc) but she’s not going to get diagnosed for that, either. 

I was diagnosed with celiac this past April and have been gluten free since May (I am 39).  I believe I am what is referred to as a Silent Celiac; I have never had the typical symptoms that most people report here, and in fact I can’t tell you what my symptoms were because I didn’t notice one iota of change when I took gluten out of my diet. 

My celiac diagnosis was a fluke; I had been researching gluten’s part in hypothyroidism before my endoscopy, which led me to reading about celiac.  I had a few of the symptoms of the 300 listed (in the U of Chicago’s list) which have not been alleviated on the gluten-free diet, so I asked the doc for the celiac biopsy, which came back with mild blunting and showing signs of celiac-related inflammation (I can’t remember the exact term).  My bloodwork a few weeks later came back totally normal, go figure.  They told me I must have been lucky and caught it early.  My food allergy test for the big 8 came back negative.

I decided to try out the Paleo diet and have been eating that way since July.  Lost 10lb so far (I needed it and more), and still don’t feel different.  I’m planning on trying the Autoimmune Protocol Paleo diet starting January.  I’m completely off grains and beans, vegetable oils, but I’m still eating dairy.

Back to hypothyroiditms/Hashi.  My TSH levels have been taken 4 times in the past 8 years and the results have always been 1.1-1.6.  In July it came back 1.6.  I do understand that TSH is actually a test for the pituitary hormone.  Even though my numbers are “normal,” I can’t help but think I’ve got something thyroid-related going on.

I’ve got low energy and fatigue and have for a while.  It got worse since November after a bout of bronchitis that required 2 rounds of antibiotics to clear up (and I wonder if that wasn’t my trigger for the celiac).  I’ve also had insomnia off and on for years which took a turn for the worse in the past few weeks.  I can get to sleep fine, but if I wake up in the middle of the night, I’m up.  I’m so tired today I’m barely functioning.  My intolerance to cold has gotten worse the past couple years, even in the summer, as has dry skin.

QUESTIONS:

Am I correct I can have normal TSH levels and still have Hashimoto’s?

Am I correct a gluten-free diet can halt or slow the progress of Hashimoto’s?

What is the treatment if you have Hashimoto’s but your TSH is normal? (This is my main question because I think this is what is going on with me)

Will being on a gluten-free diet affect the other thyroid-related tests?

Once Hashi's renders your thyroid inactive, what does it do?  Hashi's, I mean.  Does it continue to do anything?

Should everyone with Hashis or hypothyroidism be seeing an Endo?

Why don’t doctors test for Hashi?  I read somewhere they don’t because it really wouldn’t change their treatment for hypothyroidism, but….?

Thank you all so much!  Jody

Newbie question here:  I know there are new laws about listing the major allergens in food.  So, if something has "natural flavorings," "caramel color," or whatever listed in the ingredients, can I TRUST that if it DOES NOT say "Contains: Wheat" at the end of the ingredients list the item is safe?  Or is there still a loophole or something?

When did that regulation go into effect? 

Many thanks!

I feel like I will never know convenience again.  If you think you can give up most of every food you've ever loved, which the MAJORITY of food references relate to (come on, you know the ones:  cupcakes, a pizza party which is the catch-all end of the year or end of the season or birthday party you can no longer attend unless you consume a salad, the entire aspect of baking bread, slices of buttered sourdough, soups in a bread bowl, steaming bowls of macaroni and cheese) they are just stupid.  

 

 

YES!  The convenience is the main issue for me, too.  Planning ahead for meals because I can't really stop anywhere between point A and point B to eat anymore. 

I got the roasted garlic ones and didn't like it.  I agree, too, not nearly enough crackers.

I called them back and they said they run the anti-gliadin, tTG, and anti-endomysial tests.  All my numbers were within normal ranges.

I'm still going to go with the biopsy results and just assume at this point that I caught it early.  I may do a gluten challenge at some point in the future to see what happens, but not any time soon.