frustrated and not feeling well

[ironictruth]

I guess this is a rant. And a simple: anyone else have this s$#&?

Ok, so I was gluten light for roughly 2 years, not really knowing what gluten was. I guess just carb light. My brother was dx with celiac by   biopsy only about 2 years ago (blood work negative). So last April I had my bloodwork done by my PCP and only the DGP IGA was mildly  elevated. I went gluten-free for 8 months (mostly, I am sure I was getting it in my system). I did a 6 week challenge for a biopsy which was perfectly normal. I went off gluten for a month, and back on for another month  before stopping.

My GI doc was nice but there were alarm bells: 1) he was absolutely amazed I had the DQ2 gene and possibly celiac but had no wheat allergy 2) He had no idea the old glidian tests got replaced by the DGP ones...he had never heard of them 3) he forgot to run any blood work until I was a month gluten-free again.

About 3 weeks into the challenge, I started getting a lot of chest pain and small burps all of the time. I had some bowel issues but mostly in the mornings when I would empty my system, TMI.  I finally went gluten-free again about 6 weeks ago.

I now have pain between my shoulder blades, still little burps, body aches, ear/neck pain on the right side, chest pain, heart flutters, and shortness of breath.

But the worst one is the feeling of near passing out. I will be just walking along, feeling like s$#& and trying hard to pretend to be freaking happy-go-lucky or attribute it to anxiety and suddenly I will feel weak, get a visual disturbance, like when you stand up too fast.

I have been to a cardiologist, ENT and my PCP probably thinks I am nuts now. I have had stress tests, pulmonary function tests (mild asthma), you name it. the problem is, before December, I was FREAKING FINE!

My Iron and b12 are normal as of 1 month ago (pre breathing issues). My Ferritin was 49 and dropped from 74 in 3 months, but still       normal. So I do not think it is vitamin related.

I am getting so frustrated. It feels like I cannot take a deep breath, the aches and pains are annoying, my ear MAY be TMJ                             (sudden onset apparently).

I am on Pepcid daily now just "in case" it is silent reflux. My GI did not think so. The ENT ran a tube down my throat and said it was "a little red" but was more focused on my ear/neck. I also "go" a lot less now so I thought my diaphragm was being crushed. I have to use a bit of Colace. Suddenly, I am on an inhaler for "mild asthma" that I probably have had since childhood.

Oh, and I even got a script for Xanax as needed so when I start to freak out over not feeling well I can be a bit calmer. I also thought maybe this is just some weird anxiety stuff, but the Xanax does not make the symptoms go away. It only chills me a bit.

Maybe it is something else, maybe gluten sensitivity, maybe they missed the start of atrophy on the biopsy. Who knows.

Has anyone else had any of this? If so, how long on the gluten-free diet after a challenge did your symptoms last? I figured 6 weeks

 

 

 

 

[Naouel]

Hello, 

i have the same symptoms, I am on a gluten free diet. But sometimes I eat at my fiends like yesterday I just had a soup, and today I had chest pain and feeling extremely disy. 

Ijust got back home from the ER. I had the feeing I couldn't breath. ?

They told me check wil ENT specialist.  

[etbtbfs]

5 hours ago, ironictruth said:

I guess this is a rant. And a simple: anyone else have this s$#&?

Ok, so I was gluten light for roughly 2 years, not really knowing what gluten was. I guess just carb light. My brother was dx with celiac by   biopsy only about 2 years ago (blood work negative). So last April I had my bloodwork done by my PCP and only the DGP IGA was mildly  elevated. I went gluten-free for 8 months (mostly, I am sure I was getting it in my system). I did a 6 week challenge for a biopsy which was perfectly normal. I went off gluten for a month, and back on for another month  before stopping.

My GI doc was nice but there were alarm bells: 1) he was absolutely amazed I had the DQ2 gene and possibly celiac but had no wheat allergy 2) He had no idea the old glidian tests got replaced by the DGP ones...he had never heard of them 3) he forgot to run any blood work until I was a month gluten-free again.

About 3 weeks into the challenge, I started getting a lot of chest pain and small burps all of the time. I had some bowel issues but mostly in the mornings when I would empty my system, TMI.  I finally went gluten-free again about 6 weeks ago.

I now have pain between my shoulder blades, still little burps, body aches, ear/neck pain on the right side, chest pain, heart flutters, and shortness of breath.

But the worst one is the feeling of near passing out. I will be just walking along, feeling like s$#& and trying hard to pretend to be freaking happy-go-lucky or attribute it to anxiety and suddenly I will feel weak, get a visual disturbance, like when you stand up too fast.

I have been to a cardiologist, ENT and my PCP probably thinks I am nuts now. I have had stress tests, pulmonary function tests (mild asthma), you name it. the problem is, before December, I was FREAKING FINE!

My Iron and b12 are normal as of 1 month ago (pre breathing issues). My Ferritin was 49 and dropped from 74 in 3 months, but still       normal. So I do not think it is vitamin related.

I am getting so frustrated. It feels like I cannot take a deep breath, the aches and pains are annoying, my ear MAY be TMJ                             (sudden onset apparently).

I am on Pepcid daily now just "in case" it is silent reflux. My GI did not think so. The ENT ran a tube down my throat and said it was "a little red" but was more focused on my ear/neck. I also "go" a lot less now so I thought my diaphragm was being crushed. I have to use a bit of Colace. Suddenly, I am on an inhaler for "mild asthma" that I probably have had since childhood.

Oh, and I even got a script for Xanax as needed so when I start to freak out over not feeling well I can be a bit calmer. I also thought maybe this is just some weird anxiety stuff, but the Xanax does not make the symptoms go away. It only chills me a bit.

Maybe it is something else, maybe gluten sensitivity, maybe they missed the start of atrophy on the biopsy. Who knows.

Has anyone else had any of this? If so, how long on the gluten-free diet after a challenge did your symptoms last? I figured 6 weeks

 

 

 

 

Have you had hormone levels analyzed?  Esp., your thyroid, by a doctor who does all of the relevant tests?

[suelynn]

Oh my gosh..you are suffering. Find a good functional dr, that will take your whole self into the picture. I went gluten free about 4 years ago, but replaced all the reg. food with gluten free food..bread, cookies, cereal etc...then I went to preventative cardiologist, and she told me its the sugars that raise cholesterol, etc.. I also have thyroid disease. So I ditched pretty much everything that is processed food. no bread, pasta, cookies I eat meat, veggies, fruits, I feel better than I have in forever, lost 30 # dropped cholesterol 35 points. I still struggle with getting thyroid stable. I cringe when I hear people say they are going to try and cut back on gluten it is either all or nothing. I also got some good advice from the Wheat Belly dr., who is a cardiologist.he has patients that have given up gluten and have reversed heart disease, diabetes, arthritis and on and on. I believe our wheat we are altering today has been the problem of many illness that we are suffering today. good luck

[Tricia7]

It may actually be your iron level. I feel awful when my ferritin falls under 50.  I feel good when it's closer to 100.  My last test the lab said "normal" ferritin was 15-150.  Mine was 36, which explains why I was feeing awful, even though the doc I saw said it was fine.  It's only 1/3 of what I need to feel good.  Normal isn't the same as optimal. 

I don't know about pepcid, but I do know a round of nexium is what led my anemia to be diagnosed.  While blocking stomach acid, it can also block iron absorption.  I don't know if pepcid is similar in this, but I suggest you look into it.

[ironictruth]

Thank you. I did start Iron and b12 last week thinking the ferririn was taken a month ago and could be lower now. Not a huge dose, just what would be in a prenatal vitamin. 

I was also thinking of canning the pepcid as I am pretty sure the shortness of breath is not silent reflux and I do not actually suffer from heartburn. I may just scale back first. But I will certainly check out iron absorbtion and pepcid.

[ironictruth]

And thank you for the other comments. Thyroid checked and good thankfully. 

And I am very much looking forward to seeing the integrative doc next month who is associated with a university hospital in my area!

The scary stuff has been ruled out. So I may just quit all the damn meds, stay on vitamins, and probiotics and wait to see if I feel better. 

[cyclinglady]

ironic,

i think you have a strong chance of developing celiac disease if you do not already have it.  I tested "mildly positive" on the DGP IGA test only but my biopsies did reveal severe damage.   I continue to fail the TTG tests Even on follow-up testing.  The small intestine is vast (size of tennis court) and it is easy to miss damaged areas.  Did they take more than four biopsies?  

[ironictruth]

Yes, he took 6 or 8, I forget. 

I will say that going gluten-free has stopped my 4 trips to the bathroom in an hour most mornings. I have the opposite issue now. Though it always floats now and I read that could be malabsorption. It had never occurred to me that was connected until I started eating gluten again after going gluten-free the first time. I always thought it was the coffee. I assumed it was normal to totally purge your system in the mornings!

I have good days and bad now. Hoping this gets better soon!

[notme]

try skipping the dairy for awhile.  if your villi are damaged, the ends of them is what makes the enzyme to digest dairy.  so, give them a little time to heal, then you can add it back.  i think i stayed off dairy for about 6 months.  i still have a little trouble with it, but i went undiagnosed for 25 years, so there was probably lots of damage  good luck!  you might want to read the newbie 101 thread (locked topic in the coping section)  lots of practical info.  glad you're feeling better.  

[ironictruth]

Thank you. I had no idea about dairy and enzymes. 

[ironictruth]

On 4/13/2016 at 10:20 PM, Tricia7 said:

It may actually be your iron level. I feel awful when my ferritin falls under 50.  I feel good when it's closer to 100.  My last test the lab said "normal" ferritin was 15-150.  Mine was 36, which explains why I was feeing awful, even though the doc I saw said it was fine.  It's only 1/3 of what I need to feel good.  Normal isn't the same as optimal. 

I don't know about pepcid, but I do know a round of nexium is what led my anemia to be diagnosed.  While blocking stomach acid, it can also block iron absorption.  I don't know if pepcid is similar in this, but I suggest you look into it.

Hello, how long did it take to get back up? I quit the pepcid and started iron but the ferritin dropped from 74 in December, to 49 in March and 33 a couple of weeks ago.