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I think I have celiac disease - starting the road to a diagnosis, any help appreciated


tooth-whisperer

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tooth-whisperer Apprentice

Hello all,

I'm brand new here, excited to hopefully find some answers about the nightmare I've been having for the last few months.  I'm going to give my story, it's a long one so I apologize for that.  Any thoughts and help would be so appreciated!

I'm a 29 yo male, dentist by trade and in general a very normal, healthy, and happy person.   3 months ago I started having a strange feeling in my chest after dinner each night - not painful at first, nor nauseating, just a very uneasy feeling.  I then started having mild shooting pains in my chest, lightheadedness, and what felt like heart palpitations.  One week after everything started I ended up in the ER being checked for cardiac conditions, and everything came back picture perfect (blood work, contrast CT).  I followed up with my family doctor, and later an internist, and both suspected acid reflux.  My MD sent me for a gall bladder ultrasound, normal.  The internist sent me for a barium swallow, which did confirm reflux, no other abnormalities.  The PA that did my scan told me the heart palps were probably esophogeal spasms due to the reflux.

The weird thing for me was that I've never had a problem with reflux in my life.  The things I do now are nothing compared to the way I abused my stomach in college and grad school!  So I'm wondering, why now?  Why out of the blue am I having acid reflux, this doesn't seem right?  Plus, it just didn't feel like reflux - I always assumed heartburn came on for 30 minutes or so after a particularly sassy meal, and mine didn't feel like that, it took longer to develop and lasted longer too.  As time went on, I developed more symptoms - poor appetite, burning sensation in the stomach, difficulty swallowing and food feeling stuck in my esophagus, back and neck pain, headaches that would last days at a time, and bright yellow stool.  Eventually I started to see a pattern, things were ok for a couple weeks, then they would get bad for a couple weeks.  The first 2 times it flared, I lost 15 pounds in 2 weeks, each time.  I tried different acid blocking medications, and they seemed to work at first but then they stopped working and the same symptoms would return.  When things got bad, I would start a new medication, and cut my diet way back because some things were too hard to swallow or didn't sit well - breaded fried foods, hamburgers seemed to sit in my stomach eternally, and bread would just ball up and get stuck in my throat.  So I would eat yogurt with granola, salad, fruit smoothies and protein drinks (what I didn't realize at the time was that this was a very low gluten, and lactose, diet).  I would start to feel better, think I was headed in the right direction, start to introduce things back into my diet, and then two weeks later I start to feel bad again.  It took a while for me to see the cycle.

After Thanksgiving, I had been on Prilosec OTC 2xday for 4 weeks, which is pretty strong stuff, and couldn't believe it when my symptoms were returning AGAIN.  I could feel it coming, and sure enough my weight started dropping again too.  I cut the diet back, but had a couple of flour tortillas at lunch one day, and a piece of bread another day, and finally realized that my stomach didn't burn until I had lunch on those days.  One evening, I split one beer with my wife and felt like crap afterwards.  Wait, duh, gluten!  Out of desperation, 5 days ago I decided to try going gluten free just to see if it helped my reflux at all.  By the end of the first day, I felt like a million bucks.  I had spicy Mexican food (sans gluten) for dinner, realized I had forgotten to take my Prilosec beforehand, and braced myself for the worst - and it never came.  I felt GREAT.  I have been feeling very good for the rest of the week, 80-90% resolution of symptoms including finally having my appetite back.  I can consume most of the classic reflux trigger foods and feel fine.  The only irritation I get now is with dairy products, similar reaction to gluten but more mild, except yogurt which seems to be OK.  

Thankfully, my symptoms have been mild enough that I can still go to work and function.  The worst has been the psychologic toll this has taken on me.  I don't often get sick, so to go through tests and drugs and not be getting better has been very, very distressing to me, to the point that I started to consider that I could be terminally ill (30+ pounds of rapid weight loss will mess with one's head).  My wife, whom I love deeply, has many wonderful qualities, unfortunately empathy is not one of them.  Since my ER visit came back clean, she's been of the opinion that this is all in my head, and the lack of support and understanding hurts.  Especially now that I've tried to convince her that I need to modify my diet and she gets mad at me for "being a hypochondriac."  I am NOT a hypochondriac!  I've never gone to the doctor for a problem and been told nothing's wrong.  In fact, usually on the rare occasion I go, he says "Yep, you've definitely got ________" because I don't go until I'm sure something's up.

So, that's my story.  Obviously, I need to keep gluten and dairy out of my diet and see if things continue to improve.  I'm sure a lot of people *think* they have celiac disease, and end up not having it.  But I'm pretty confident that I'm on to something here.  I do have some questions:  how long does it take to heal, to the point that I could gain weight back if I want to?  Do I really need to have all the testing done and be officially diagnosed?  It sounds like a real PITA to do all the tests and endoscopies.  Plus if I have to do gluten and dairy for 8+ weeks prior to testing, I'm going to lose another 30 pounds, and frankly I don't have 30 to lose.  I have a new patient appointment set up with the GI specialist in 3 weeks, should I try to be rushed in sooner since everything's still in my system now?  I've also heard it can take a while to be properly diagnosed, due to unreliable test results, lack of doctor knowledge - ain't nobody got time for that!  I have student loans to pay and sick patients of my own to help, I don't have time to waste on myself!

If you've reached the end of my post, thank you for reading.  Any advice or help would be appreciated!


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CherylS Apprentice

Hi and welcome,

I'm in the process of figuring out what's going on in my life too.  I know the feeling you get of stuff stuck in your throat, I call it a hairball, because that's what it feels like to me, a big lump, it drives me crazy because while it doesn't necessarily hurt, it's uncomfortable and not something I can ignore.

Can you get in with your PCP asap and get a full celiac panel run?  It would be nice to have those results for your GI appointment.

My PCP ran a celiac panel, which ended up not being a full panel, she ran 3 tests which were negative.  She was suspicious that something was definitely going on and sent me to a GI doc. Based on my history (other autoimmune condition, symptoms, and chronic treatment resistant anemia) the GI doc ran a celiac genetic test, she said lets do this so we can eliminate celiac and go in a different direction if we need to.  The genetic test came back positive for one of the genes, I am getting an EGD with biopsies and colonoscopy in January (my preference we wait due to high deductible insurance).

I'm sorry that your wife isn't more supportive, that has to be difficult for you.

I quit eating gluten on my own for a while and felt better.  When I went to the GI doctor, I was certain my genetic test was going to come back negative, I felt like maybe my symptoms were in my head.  My GI doctor told me to eaten gluten every day until my biopsies were done and I am miserable, I realize my symptoms aren't in my head.

I'm a nurse so I try to be logical when researching what's going on.  It's quite frustrating because like you, I don't go to the doctor unless I absolutely have to.  The only reason I went for this cascade of events is because I run half marathons and was having heart palpitations.  I routinely donate blood and I was turned away in August because my Hemoglobin was low.  I decided to go to the doctor because I didn't want to be one of those runners who has sudden death during a race.  

Please keep us posted, you're not crazy.  Even if you don't have celiac you could have gluten intolerance.  I've learned that some of the celiac symptoms and gluten issues are found in people with Rheumatoid Arthritis, which is my next pathway if all of this testing is negative.  I have joint pain and peripheral neuropathy on occasion.

mommida Enthusiast

The most concerning part of these posts to me "food stuck in throat" "hairball" "Prilosec worked then it didn't" "rapid weight loss"  and "gluten"

Go to a Gastroenterologist with experience in Celiac and Eosinophilic Esophagiits (or EGID Eosinophilic Gastrointestinal Disorders)  Depending on the week the statistical number of an association to Celiac.  Time is of the essence, because seasonal allergies are a strong possibility of an airborne "trigger". Most common allergy season with a rise in symptoms/ diagnoses is late summer to early fall.  (In the mid West January is cold enough to kill of the the ragweed and leaf mold from fall.   You need to be diagnosed by an endoscopy with biopsy.  The samples that are taken must have the order to the pathologist to put red dye to highlight the eosinophils.  Adults are diagnosed by a higher count than children.

In layman's terms of describing EE.

An autoimmune disease where normal tissue is attacked in the esophagus by eosinphils. Eosinophils are normally reserved by the immune system to attack parasites and have a spearlike shaft.  (It's not the Army, it's the Marines)  Once activated the eosinophils can stay active for 12 DAYS.  (very difficult to track down the food or airborne "trigger".

Like Celiac; EE has a "trigger" allergen (not a true allergy but a protein that has activated the immune response)

This causes all kinds of damage in the esophagus... Schatzi rings/ narrowing of the esophagus, grooves and furroughs, inflammation, and patches of creamy puss.  This damage can lead to food particles stuck in the esophagus and emergency dilation may be necessary.

Symptoms include what previous posts have described.  Also look for enlarged tonsils with white patches.  ( similar to the white speckles of step throat, but creamier color and free form/ blob shaped) , very bad breath, dark circles under the eyes, severe GERD like symptoms, and I would add all the symptoms of Celiac although there can be extreme bouts of "D" there can also be constipation at the same time.  (there can also be an extreme blob of constipation sitting in the colon)

So if/when a patient is diagnosed...  A modified steroid inhaled is to be swallowed, sometimes acid reflux meds.  An elimination diet to discover the trigger allergens.  This is usually eliminating all the top 8 allergens but add gluten and peas to that list.  These are the most complex proteins in the human diet.  These will be challenged in the purest form of the food, small amount for at least three days looking for the reaction (12 days of reaction for eosinophils)

DO NOT change your diet before testing and get in fast while environmental environment is still consistant when severe symptoms hit.  Slurpees or Icees tend to help during this time to soothe the irritation ~I've never found gluten in these drinks and you probably need some extra calories right now.

Discuss with your doctor other reasons for your symptoms (some of which can be H.Ployri.,hernia, parasites, other conditions Barrete's Esophagus, Nutcracker syndrome)

Good luck with your testing.  Keep us informed on how you are doing.  Don't hesistate to ask any questions.

cyclinglady Grand Master

Great advice has been given.  I would like to add that a HIDA scan can rule out a non-functioning gallbladder.  An ultrasound can look just for stones.  

You can just go gluten free without testing.  My hubby did that per the poor advice of my allergist and his GP 14 years ago.  It worked but we will never know if he has celiac disease.  He will be the first to tell you that I get way more support from family, friends and medical staff with my celiac disease diagnosis.  It helps to get my kid tested every few years too even though she has no symptoms.   But you have to do what is best for you.  Should you decided to get tested for celiac disease make sure you get the complete panel.  

Take care!

tooth-whisperer Apprentice

Thanks to you both!  I appreciate the input.

Mommida, I've been tested for H. Pylori, which was negative, and had an upper GI series (barium swallow), which confirmed no abnormalities of the esophagus or stomach lining- not sure if it picks up Barrett's though.

Cheryl, thanks for the advice.  My PCP is a wonderful guy, but I fear he just has no knowledge of celiac and if I'm going to get tested, I want to make sure I'm getting the right ones!  Just like what you described, I hear a lot of people say they get the tests done, but for whatever reason they're not reliable or a false negative.  I don't want to fight to get a diagnosis if I don't have to, I'm sure you are feeling the same way.  I'm going to call the GI specialist tomorrow and see if there's a way I could get in sooner, or if one of the docs can take a look at my case and get me set up for appropriate tests so at least I don't have to wait until after the holidays.  My appointment is Christmas Eve, they're so hard to get in to see, waiting list is like 2-3 months.  I'm just worried I'll just be doing the formalities on my first visit, then testing will get pushed back because of the holidays, etc.  If I have to stay on gluten I would much rather do it now for a few weeks, versus wait and/or have to start all over again from scratch later.

tooth-whisperer Apprentice

Thanks cyclinglady, I think you replied to me on the healingwell forum too?  I really would prefer to get tested and diagnosed, I'm just concerned that the medical "runaround" I'm going to get will be ridiculous to the point of not being worth it.  Just getting in to see a specialist is almost comically difficult - thank God I don't have something life threatening, I would probably die before seeing a doctor!  Definitely going to push for things to be done SOON.  I can handle being diagnosed with Celiac Disease, I'm sure it won't always be fun, or easy, but at least I'll know what's going on and hopefully put my mind at ease.  It's hard to hit a moving target, that's what I feel like my path has been so far.

CherylS Apprentice
6 hours ago, tooth_whisperer said:

Thanks to you both!  I appreciate the input.

Mommida, I've been tested for H. Pylori, which was negative, and had an upper GI series (barium swallow), which confirmed no abnormalities of the esophagus or stomach lining- not sure if it picks up Barrett's though.

Cheryl, thanks for the advice.  My PCP is a wonderful guy, but I fear he just has no knowledge of celiac and if I'm going to get tested, I want to make sure I'm getting the right ones!  Just like what you described, I hear a lot of people say they get the tests done, but for whatever reason they're not reliable or a false negative.  I don't want to fight to get a diagnosis if I don't have to, I'm sure you are feeling the same way.  I'm going to call the GI specialist tomorrow and see if there's a way I could get in sooner, or if one of the docs can take a look at my case and get me set up for appropriate tests so at least I don't have to wait until after the holidays.  My appointment is Christmas Eve, they're so hard to get in to see, waiting list is like 2-3 months.  I'm just worried I'll just be doing the formalities on my first visit, then testing will get pushed back because of the holidays, etc.  If I have to stay on gluten I would much rather do it now for a few weeks, versus wait and/or have to start all over again from scratch later.

Call your PCP and talk to them.  I'm a nurse and I feel that I get a little professional courtesy from my doctor, hopefully you do too.  There is a list of the proper tests, there are 5-6 of them.  I went to the first appointment with my GI doctor in the middle of November and she's the one who ordered the genetic testing.


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tooth-whisperer Apprentice
15 hours ago, CherylS said:

Call your PCP and talk to them.  I'm a nurse and I feel that I get a little professional courtesy from my doctor, hopefully you do too.  There is a list of the proper tests, there are 5-6 of them.  I went to the first appointment with my GI doctor in the middle of November and she's the one who ordered the genetic testing.

Thanks again for the advice Cheryl.  I just called the GI specialist's office and put myself on their short call/cancellation list, to hopefully get in sooner.  The internist at a clinic I work in has kind of taken over my case from my PCP, so I'm going to talk to her tomorrow at work and try to get the blood tests ordered.  Hopefully being off gluten for 5-6 days won't skew my test results, even if I have to wait a week with normal diet before having the test, that would be ok, since I'll probably have to go back on for the biopsy as well.

Every time I go back to a normal diet, within a few weeks I lose 15-ish pounds, so I really want to get this done ASAP.  Thankfully I had some excess stored up, but I've almost exhausted that - lost 35 pounds now since September.  Luckily I caught my most recent dip in weight early and since stopping gluten last week I think I'm stabilizing again.  I'm 5'11" and started at 225, now down to 190.  Which 190 sounds like a lot, but I've always had a lot of muscle mass, apparently due to genetics because I don't work out excessively, but my point is I'm almost out of fat to lose, and afraid if it goes beyond that I'm going to have a bigger problem with malnutrition.  I would say if it goes beyond another 8 weeks, I'll probably be down to or below 170, which is less than I weighed in high school.  Not terrible, compared to what some people experience, but I would rather avoid it.  I just wish I could go back to being fat and happy!

CherylS Apprentice

Good luck to you!  I wish I could trade with you and lose weight.  When I eat gluten I am starving all of the time.

tooth-whisperer Apprentice
20 minutes ago, CherylS said:

Good luck to you!  I wish I could trade with you and lose weight.  When I eat gluten I am starving all of the time.

Yeah, I feel almost ridiculous for complaining about weight loss.  My wife thinks it's great!

cyclinglady Grand Master

These are the celiac tests:

 
-Tissue Transglutaminase (tTG) IgA and (tTG) IgG
-Deamidated Gliadin Peptide (DGP) IgA and (DGP) IgG
-EMA IgA 
-total serum IgA and IgG (control test)
-AGA IGA and AGA IgG - older and less reliable tests largely replace by the DGP tests
 
-endoscopic biopsy - make sure at least 6 samples are taken
 
VERY IMPORTANT:  Keep eating gluten daily until ALL testing is complete or the tests can be inaccurate.  
 
(Source: NVSMOM -- ?)

 

I push for them all because I tested positive to only the DGP Iga (even follow-up testing) yet I had a Marsh Stage IIIB (moderate to severe) biopsy result (anemia was pretty much my main symptom too).  My insurance and provider allows only GI doctors to order the entire panel.  

 

 
bartfull Rising Star

I absolutely love your screen name! :lol:

I'm glad you are going for testing. If you test positive your wife will believe you and maybe even be sorry for what she said. I'll tell you a story - when I was a kid my Mom was always complaining of health problems. One day it would be a headache, the next day joint pains. She'd complain about her stomach, then the next day she'd be suffering from insomnia. I called her a hypochondriac.

Of course you guessed it by now. Turns out she had had celiac all her life and all of her complaints were real. Then after she died it turned out that I too started having similar problems. Yep, I have celiac too. But I never got a chance to apologize to Mom, and I will always kick myself for not being more compassionate. Your wife is lucky. She'll have a chance to make it up to you.

tooth-whisperer Apprentice

Thanks to you both!  I bit the bullet and had stir fry with soy sauce and a beer tonight.  Probably should still take it easy on the beer, but wow, I am going to miss it if I have celiac disease!  I live in Grand Rapids, MI - aka Beer City USA, this will be a cruel, cruel torture for me!  

Bartfull, my wife has thankfully been more understanding in the last couple days - I still don't think she seriously believes I have a gluten problem (and for all I know, maybe I don't, that remains to be seen), but she's at least humoring me and being more patient.  She really is a wonderful mate, I don't want to make her sound like a bad person.  Lastnight we got a bunch of gluten-free stuff at Trader Joe's, it was fun and most of the food we've tried has actually been pretty good.  We both agree that we liked the brown rice and quinoa pasta more than regular pasta, and I like the gluten-free ginger snaps better than the normal ones (which are her favorite).  

Well I think I have some head, neck, and back aches to look forward to, and a bunch of other not so comfortable stuff, but at least I can enjoy some of my favorite gluten items one more time!

squirmingitch Veteran

Ahhhhhhhhhhhh, but there are gluten free beers so you won't have to go without. :)Or maybe turn your palate toward wines. Wines are gluten free so can always be enjoyed.

tooth-whisperer Apprentice

Well, day 3 back on the G and I'm starting to feel it again.  Chest pain, shoulder/back/neck pain, tight esophagus, uneasy stomach.  Thankfully, again, all quite mild, but definitely there.  I had actually gained a couple pounds!  I'm sure they will go away, but it was nice just to see the needle go up.  And to be honest I'm a little relieved that I could be on to something.  Who knows, maybe in the long run, if I do have a gluten issue, it'll encourage me to eat healthier!

  • 9 months later...
jeweler57 Newbie
On Saturday, December 05, 2015 at 10:42 PM, tooth_whisperer said:

Hello all,

I'm brand new here, excited to hopefully find some answers about the nightmare I've been having for the last few months.  I'm going to give my story, it's a long one so I apologize for that.  Any thoughts and help would be so appreciated!

I'm a 29 yo male, dentist by trade and in general a very normal, healthy, and happy person.   3 months ago I started having a strange feeling in my chest after dinner each night - not painful at first, nor nauseating, just a very uneasy feeling.  I then started having mild shooting pains in my chest, lightheadedness, and what felt like heart palpitations.  One week after everything started I ended up in the ER being checked for cardiac conditions, and everything came back picture perfect (blood work, contrast CT).  I followed up with my family doctor, and later an internist, and both suspected acid reflux.  My MD sent me for a gall bladder ultrasound, normal.  The internist sent me for a barium swallow, which did confirm reflux, no other abnormalities.  The PA that did my scan told me the heart palps were probably esophogeal spasms due to the reflux.

The weird thing for me was that I've never had a problem with reflux in my life.  The things I do now are nothing compared to the way I abused my stomach in college and grad school!  So I'm wondering, why now?  Why out of the blue am I having acid reflux, this doesn't seem right?  Plus, it just didn't feel like reflux - I always assumed heartburn came on for 30 minutes or so after a particularly sassy meal, and mine didn't feel like that, it took longer to develop and lasted longer too.  As time went on, I developed more symptoms - poor appetite, burning sensation in the stomach, difficulty swallowing and food feeling stuck in my esophagus, back and neck pain, headaches that would last days at a time, and bright yellow stool.  Eventually I started to see a pattern, things were ok for a couple weeks, then they would get bad for a couple weeks.  The first 2 times it flared, I lost 15 pounds in 2 weeks, each time.  I tried different acid blocking medications, and they seemed to work at first but then they stopped working and the same symptoms would return.  When things got bad, I would start a new medication, and cut my diet way back because some things were too hard to swallow or didn't sit well - breaded fried foods, hamburgers seemed to sit in my stomach eternally, and bread would just ball up and get stuck in my throat.  So I would eat yogurt with granola, salad, fruit smoothies and protein drinks (what I didn't realize at the time was that this was a very low gluten, and lactose, diet).  I would start to feel better, think I was headed in the right direction, start to introduce things back into my diet, and then two weeks later I start to feel bad again.  It took a while for me to see the cycle.

After Thanksgiving, I had been on Prilosec OTC 2xday for 4 weeks, which is pretty strong stuff, and couldn't believe it when my symptoms were returning AGAIN.  I could feel it coming, and sure enough my weight started dropping again too.  I cut the diet back, but had a couple of flour tortillas at lunch one day, and a piece of bread another day, and finally realized that my stomach didn't burn until I had lunch on those days.  One evening, I split one beer with my wife and felt like crap afterwards.  Wait, duh, gluten!  Out of desperation, 5 days ago I decided to try going gluten free just to see if it helped my reflux at all.  By the end of the first day, I felt like a million bucks.  I had spicy Mexican food (sans gluten) for dinner, realized I had forgotten to take my Prilosec beforehand, and braced myself for the worst - and it never came.  I felt GREAT.  I have been feeling very good for the rest of the week, 80-90% resolution of symptoms including finally having my appetite back.  I can consume most of the classic reflux trigger foods and feel fine.  The only irritation I get now is with dairy products, similar reaction to gluten but more mild, except yogurt which seems to be OK.  

Thankfully, my symptoms have been mild enough that I can still go to work and function.  The worst has been the psychologic toll this has taken on me.  I don't often get sick, so to go through tests and drugs and not be getting better has been very, very distressing to me, to the point that I started to consider that I could be terminally ill (30+ pounds of rapid weight loss will mess with one's head).  My wife, whom I love deeply, has many wonderful qualities, unfortunately empathy is not one of them.  Since my ER visit came back clean, she's been of the opinion that this is all in my head, and the lack of support and understanding hurts.  Especially now that I've tried to convince her that I need to modify my diet and she gets mad at me for "being a hypochondriac."  I am NOT a hypochondriac!  I've never gone to the doctor for a problem and been told nothing's wrong.  In fact, usually on the rare occasion I go, he says "Yep, you've definitely got ________" because I don't go until I'm sure something's up.

So, that's my story.  Obviously, I need to keep gluten and dairy out of my diet and see if things continue to improve.  I'm sure a lot of people *think* they have celiac disease, and end up not having it.  But I'm pretty confident that I'm on to something here.  I do have some questions:  how long does it take to heal, to the point that I could gain weight back if I want to?  Do I really need to have all the testing done and be officially diagnosed?  It sounds like a real PITA to do all the tests and endoscopies.  Plus if I have to do gluten and dairy for 8+ weeks prior to testing, I'm going to lose another 30 pounds, and frankly I don't have 30 to lose.  I have a new patient appointment set up with the GI specialist in 3 weeks, should I try to be rushed in sooner since everything's still in my system now?  I've also heard it can take a while to be properly diagnosed, due to unreliable test results, lack of doctor knowledge - ain't nobody got time for that!  I have student loans to pay and sick patients of my own to help, I don't have time to waste on myself!

If you've reached the end of my post, thank you for reading.  Any advice or help would be appreciated!

Dear Young Dentist: I hope that you have had good advice since December. It took more than 55 years to sort out my chronic illness, but until last night, I never knew my extreme chest pain (costochondritis) was related to gluten. I get these pains, like an ice pick to my sternum, after being glutened or especially after gluten has gotten into the air through baking. Yes, you can be glutened by gluten in the air. 

So, last night, I went to our clean air bedroom with intense pain, turned the air filter on high, shut the door, and the pain went away. Entirely. I was laying in bed reading to escape the overpowering scent of fudge brownies. I informed my husband of almost 34 years of marriage that we are never again baking wheat flour anything in this new home. Ever. 

There are lots of great Gluten-free brownie mixes, so it felt abusive or at least insensitive for him to insist on having to bake the wheat flour version.  Try using a gluten-free cake mix with a can of pumpkin, nothing else added. Makes a fantastic treat, as cupcakes, contains no eggs or oil, and makes life a little sweeter.

I have had to go on an Anti-inflammatory Diet,  cutting out gluten, sugar, white potatoes, tomatoes, eggplant, and peppers. My inflammation response is almost entirely gone, if I stick to that diet. Costochondritis  is apparently an inflammation reaction of the tissues around the ribs and chest, and is common among people with Celiac Disease. 

Finally, after 59 years of occasional extreme chest pains, I know why. Learned this last night. My advice about dairy is to only eat Plain Greek Yogurt sweetened with Stevia (Stevia in the Raw or Stevia drops). Some flavored yogurt has gluten in it, so plain is safer. I personally prefer Fage brand. 

The diet calls for you to eat a lot of healthy veggies and meat, etc. You will gain weight after your gut heals. I also take multi-strand Ultimate Probiotic with 15 million count in it, to help digestion. Plain kefir is the best in natural tummy help.

It took years to learn that I have Celiac Disease,  and none of my tests showed it. I began weeding out all the foods that have gluten in them, and started seeing my health rebound. Please be patient and ask your wife to learn more by reading gluten-free cooking magazines.

The hardest thing is to get gluten out of your house, replacing baking pans, cookie sheets, plastic food storage, wooden cutting boards, etc. I have my own toaster, since my husband is not on a gluten-free diet. All the best on your journey.

GFinDC Veteran

Welcome to the forum Jewler57,

Toothwhisperer hasn't been around the forum since Jan-2015, so I doubt you'll get  a response from him.  But there are plenty of other threads that people can use your advice in!

Carry on! :)

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    • Scott Adams
      Your post demonstrates the profound frustration and isolation that so many in the Celiac community feel, and I want to thank you for channeling that experience into advocacy. The medical gaslighting you endured for decades is an unacceptable and, sadly, a common story, and the fact that you now have to "school" your own GI specialist speaks volumes about the critical lack of consistent and updated education. Your idea to make Celiac Disease a reportable condition to public health authorities is a compelling and strategic one. This single action would force the system to formally acknowledge the prevalence and seriousness of the disease, creating a concrete dataset that could drive better research funding, shape medical school curricula, and validate the patient experience in a way that individual stories alone often cannot. It is an uphill battle, but contacting representatives, as you have done with Adam Gray, is exactly how change begins. By framing it as a public health necessity—a matter of patient safety and protection from misdiagnosis and neglect—you are building a powerful case. Your voice and your perseverance, forged through thirty years of struggle, are exactly what this community needs to ensure that no one else has to fight so hard just to be believed and properly cared for.
    • Scott Adams
      I had no idea there is a "Louisville" in Colorado!😉 I thought it was a typo because I always think of the Kentucky city--but good luck!
    • Scott Adams
      Navigating medication safety with Celiac disease can be incredibly stressful, especially when dealing with asthma and severe allergies on top of it. While I don't have personal experience with the HealthA2Z brand of cetirizine, your caution is absolutely warranted. The inactive ingredients in pills, known as excipients, are often where gluten can be hidden, and since the FDA does not require gluten-free labeling for prescription or over-the-counter drugs, the manufacturer's word is essential. The fact that you cannot get a clear answer from Allegiant Health is a significant red flag; a company that is confident its product is gluten-free will typically have a customer service protocol to answer that exact question. In situations like this, the safest course of action is to consider this product "guilty until proven innocent" and avoid it. A better alternative would be to ask your pharmacist or doctor to help you identify a major national brand of cetirizine (like Zyrtec) whose manufacturer has a verified, publicly stated gluten-free policy for that specific medication. It's not worth the risk to your health when reliable, verifiable options are almost certainly available to you. You can search this site for USA prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
    • Scott Adams
      What you're describing is indeed familiar to many in the Celiac community, especially in the early stages of healing. When the intestinal villi are damaged from Celiac disease, they struggle to properly digest and absorb fats, a condition known as bile acid malabsorption. This can cause exactly the kind of cramping and spasms you're seeing, as undigested fats can irritate the sensitive gut lining. It is highly plausible that her reactions to dairy and eggs are linked to their higher fat content rather than the proteins, especially since she tolerates lean chicken breast. The great news is that for many, this does improve with time. As her gut continues to heal on a strict gluten-free diet, her ability to produce the necessary enzymes and bile to break down fats should gradually return, allowing her to slowly tolerate a wider variety of foods. It's a slow process of healing, but your careful approach of focusing on low-fat, nutrient-dense foods like seeds and avocado is providing her system the best possible environment to recover. Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful: Thank you for sharing your story—it's a valuable insight for other parents navigating similar challenges.
    • Beverage
      I had a very rough month after diagnosis. No exaggeration, lost so much inflammatory weight, I looked like a bag of bones, underneath i had been literally starving to death. I did start feeling noticeably better after a month of very strict control of my kitchen and home. What are you eating for breakfast and lunch? I ignored my doc and ate oats, yes they were gluten free, but some brands are at the higher end of gluten free. Lots of celics can eat Bob's Red Mill gluten-free oats, but not me. I can now eat them, but they have to be grown and processed according to the "purity protocol" methods. I mail order them, Montana Gluten-Free brand. A food and symptoms and activities log can be helpful in tracking down issues. You might be totally aware, but I have to mention about the risk of airborne gluten. As the doc that diagnosed me warned . . Remember eyes, ears, nose, and mouth all lead to your stomach and intestines.  Are you getting any cross contamination? Airborne gluten? Any pets eating gluten (they eat it, lick themselves, you pet them...)? Any house remodeling? We live in an older home, always fixing something. I've gotten glutened from the dust from cutting into plaster walls, possibly also plywood (glues). The suggestions by many here on vitamin supplements also really helped me. I had some lingering allergies and asthma, which are now 99% gone. I was taking Albuterol inhaler every hour just to breathe, but thiamine in form of benfotiamine kicked that down to 1-2 times a day within a few days of starting it. Also, since cutting out inflammatory seed oils (canola, sunflower, grapeseed, etc) and cooking with real olive oil, avocado oil, ghee, and coconut oil, I have noticed even greater improvement overall and haven't used the inhaler in months! It takes time to weed out everything in your life that contains gluten, and it takes awhile to heal and rebuild your health. At first it's mentally exhausting, overwhelming, even obsessive, but it gets better and second nature.
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