Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.


  • Celiac.com Sponsor (A1):
    Celiac.com Sponsor (A1-M):
  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

I Get To Gluten Myself - Endo Next Friday


Smylinacha

Recommended Posts

Smylinacha Apprentice

Hello,

 

Well, it's been over 2 months that I have gone gluten-free and I have no complains with the diet - I can't believe how crappy I used to eat so I'm happy I eat more fruits, veggies and hardly any processed garbage anymore.  I know I have accidentally glutened myself a few times because my stomach problems start up again and normally last for 2 days - usually happens at work when I can't turn down a cookie or I put the wrong salad dressing on my lunch.

 

Although I feel much better, I'm still losing weight (down to 94 lbs now) and one thing didn't go away - I have burning/pressure in my upper stomach and sometimes as the day goes by it can get worse.  Only thing that makes me feel better is to drink a New Planet Beer or a hard cider - bubbly, which will make me burp.  But it comes back and sometimes I have a problem at night going to bed with that pressure.

 

I went to see the Gastro today to talk to her about and she scheduled the endo for next Friday. She pressed on my stomach and down my my intestines it didn't hurt like it used to but my upper stomach sort of hurt when she pressed on it - not stabbing pain, but pressure.  I am to gluten up again until next Friday (not looking forward to that but I'll do what I gotta do).  She is going to check for H-Pylori - what is that? And she wants to check for ulcers/hernia?  Plus I'll get a biopsy done for the celiac.

 

I just hope I get somewhere with all this.  Anyone ever have H-Pylori or an ulcer?


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



SeekingSarah Apprentice

Over what time period have you lost the 94 lbs? I asked because I've put on an additional 150lbs in the past 5 years...despite revision to WLS and healthier eating...wondering if the key is going gluten free waiting for tests etc to go....

Smylinacha Apprentice

I didn't lose 94 pounds but I went from 106 to 94 in a year's timeframe....still eating like a pig until gluten free a couple of months ago.  I've always been thin, late bloomer as a child and had the symptoms for years.  Felt better a few years ago and then bam, back again.

SeekingSarah Apprentice

I didn't lose 94 pounds but I went from 106 to 94 in a year's timeframe....still eating like a pig until gluten free a couple of months ago.  I've always been thin, late bloomer as a child and had the symptoms for years.  Felt better a few years ago and then bam, back again.

Ah sorry I see I misread. I know it can be frustrating at either end of the spectrum. Feeling better is what is important, I hope you get some answers. I'm scheduled to see a GI April 1st. I saw one 5 years ago I just went for GI symptoms no idea other issues might all be related...as he was telling me what he was going to test for he said he would do a blood test to rule out Celiac but he didn't suspect it as most are under not over weight, and he said it was neg, I have no idea what all tests were run, etc...I need to get a copy to see...he just deemed me IBS and sent me on my way. 

Smylinacha Apprentice

Yup...was dx'd years ago with IBS....I think there is more to it. I have read so many posts about people being overweight with celiac so it still could be your problem. Are you feeling batter if you go gluten free? Helped me big time but now I am glutening on beer and chocolate chip cookies :-) God help me

EmiPark210 Contributor

Do you chew gum? That can cause a lot of excess stored air into your system which can create feelings of pressure. But if bubbly stuff helps, maybe expanding your options outside of alcohol might also alleviate issues? I am a huge lover of ginger beer (ginger ale is to weak tasting) for a caffeine-free, nonalcoholic bubbly drink, and the ginger can help with stomach issues.  

Enjoy the cookies!

SeekingSarah Apprentice

Yup...was dx'd years ago with IBS....I think there is more to it. I have read so many posts about people being overweight with celiac so it still could be your problem. Are you feeling batter if you go gluten free? Helped me big time but now I am glutening on beer and chocolate chip cookies :-) God help me

I just made the connection last Wednesday, have appt April 1 and given my first blood test supposedly were negative I'm not trying to go gluten free until after testing. It's kinda hard mentally because I do cook and eat fresh foods, when I lived in FL I belonged to an organic fruit and veg buying club, but I do still eat whole wheat bread, pasta, "healthy" carbs and fiber you know fiber for the IBS...grrrr. So it's hard to continue to eat thinking I might just be poisoning myself but then knowing to get the answer I need to keep my normal eating for now.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Smylinacha Apprentice

Yep ginger ale too but my 1 beer is right after work. I do chew gum at work and am trying to cut back.

Well to most people everyday food is normal and we are "special". Just glad they have gluten free breads and pastas!

Stinks that we have to gluten again for tests. I wasn't going to but since they want to check for h-pylori then might as well do it and get it over with.

CiscoEngineer Newbie

Smylinacha,

 

I just went through this. Spent the past 4 months having the same symptoms you are experiencing - pressure in chest, burning, waking from sleep, etc...  I had my endoscopy a little over a month ago.  It ended up being Eosinophilic Esophagitis (EE).  Basically, I had an allergy to something (probably gluten, as I've been eating gluten for 10 years now, after a suspected misdiagnosis of Celiac which turns out may have actually been there all along (results come in this Friday)), either in the environment or in food, and it has developed and irritated my esophagus over time to the point where I developed strictures at the bottom of the esophagus, and ridges like a ruffles potato chip on my esophagus from the reaction, which in turn makes my esophagus hard and not flexible.

 

So when you eat, your esophagus is not bringing the food directly into your stomach as it should. Rather, it irritates your esophagus further and some of the food sits on the ledge of the stricture at the bottom of your throat entry-point into your stomach, waiting to "fall in."  This sensation mimics a heart attack due to the pressure it causes.  The treatment is a steroidal inhaler like people take for asthma, but instead of inhaling, you puff and swallow, to heal the reaction in your throat. It takes about a week, but then you will feel back to 90%. The treatment lasts for 6 weeks, twice daily, four puffs total. If this doesn't help, then the next step is to perform another endoscopy and stretch the stricture, removing the "ledge" that has formed at the bottom of the throat.

 

Also, H. Pylori is a bacteria that half the population has, but 80% are asymptomatic. However, 20% experience symptoms from the bacteria's cylindrical shape possessing the ability to grind through the stomach lining, causing ulcers, bloody/coffe-ground-like vomit, blood stools, and a myriad of other gastrointestinal issues.  Treatment is a hard course of strong antibiotics for about two weeks.

Smylinacha Apprentice

SSorry you have EE. But at least there is a medication for it. Not sure what this is as it isn't painful but just pressure. Not as bad today and don't know why. Gluten day 5 and my stomach isn't as bad as I thought but I have all the other symptoms which I will post. As form the h-pylori, no bloody vomit or stools. Keep us posted on your results on Friday and thanks form the reply as I will do some research on EE :-)

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      8

      how much gluten do I need to eat before blood tests?

    2. - trents replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      IBS-D vs Celiac

    3. - trents replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      8

      how much gluten do I need to eat before blood tests?

    4. - SilkieFairy posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      IBS-D vs Celiac

    5. - catnapt posted a topic in Related Issues & Disorders
      0

      anyone here diagnosed with a PARAthyroid disorder? (NOT the thyroid) the calcium controlling glands

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,321
    • Most Online (within 30 mins)
      7,748

    James Minton
    Newest Member
    James Minton
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • catnapt
      oh that's interesting... it's hard to say for sure but it has *seemed* like oats might be causing me some vague issues in the past few months. It's odd that I never really connect specific symptoms to foods, it's more of an all over feeling of unwellness after  eating them.  If it happens a few times after eating the same foods- I cut back or avoid them. for this reason I avoid dairy and eggs.  So far this has worked well for me.  oh, I have some of Bob's Red Mill Mighty Tasty Hot cereal and I love it! it's hard to find but I will be looking for more.  for the next few weeks I'm going to be concentrating on whole fresh fruits and veggies and beans and nuts and seeds. I'll have to find out if grains are truly necessary in our diet. I buy brown rice pasta but only eat that maybe once a month at most. Never liked quinoa. And all the other exotic sounding grains seem to be time consuming to prepare. Something to look at later. I love beans and to me they provide the heft and calories that make me feel full for a lot longer than a big bowl of broccoli or other veggies. I can't even tolerate the plant milks right now.  I have reached out to the endo for guidance regarding calcium intake - she wants me to consume 1000mgs from food daily and I'm not able to get to more than 600mgs right now.  not supposed to use a supplement until after my next round of testing for hyperparathyroidism.   thanks again- you seem to know quite a bit about celiac.  
    • trents
      Welcome to the celiac.com community, @SilkieFairy! You could also have NCGS (Non Celiac Gluten Sensitivity) as opposed to celiac disease. They share many of the same symptoms, especially the GI ones. There is no test for NCGS. Celiac disease must first be ruled out.
    • trents
      Under the circumstances, your decision to have the testing done on day 14 sounds very reasonable. But I think by now you know for certain that you either have celiac disease or NCGS and either way you absolutely need to eliminate gluten from your diet. I don't think you have to have an official diagnosis of celiac disease to leverage gluten free service in hospitals or institutional care and I'm guessing your physician would be willing to grant you a diagnosis of gluten sensitivity (NCGS) even if your celiac testing comes up negative. Also, you need to be aware that oats (even gluten free oats) is a common cross reactor in the celiac community. Oat protein (avenin) is similar to gluten. You might want to look at some other gluten free hot  breakfast cereal alternatives.
    • SilkieFairy
      After the birth of my daughter nearly 6 years ago, my stools changed. They became thin if they happened to be solid (which was rare) but most of the time it was Bristol #6 (very loose and 6-8x a day). I was on various medications and put it down to that. A few years later I went on this strict "fruit and meat" diet where I just ate meat, fruit, and squash vegetables. I noticed my stools were suddenly formed, if a bit narrow. I knew then that the diarrhea was probably food related not medication related. I tried following the fodmap diet but honestly it was just too complicated, I just lived with pooping 8x a day and wondering how I'd ever get and keep a job once my children were in school.  This past December I got my yearly bloodwork and my triglycerides were high. I looked into Dr. William Davis (wheat belly author) and he recommended going off wheat and other grains. This is the first time in my life I was reading labels to make sure there was no wheat. Within 2 weeks, not only were my stools formed and firm but I was only pooping twice a day, beautiful formed Bristol #4.  Dr. Davis allows some legumes, so I went ahead and added red lentils and beans. Nervous that the diarrhea would come back if I had IBS-D. Not only did it not come back, it just made my stools even bigger and beautiful. Still formed just with a lot more width and bulk. I've also been eating a lot of plant food like tofu, mushrooms, bell peppers, hummus etc which I thought was the cause of my diarrhea before and still, my stools are formed. In January I ran a genetics test because I knew you had to have the genes for celiac. The report came back with  DQ 2.2 plus other markers that I guess are necessary in order for it to be possible to have celiac. Apparently DQ 2.2 is the "rarer" kind but based on my report it's genetically possible for me to have celiac.  I know the next step is to bring gluten back so I can get testing but I am just not wanting to do that. After suffering with diarrhea for years I can't bring myself to do it right now. So that is where I am!   
    • catnapt
      learned I had a high PTH level in 2022 suspected to be due to low vit D  got my vit D level up a bit but still have high PTH   I am 70 yrs old (today in fact) I am looking for someone who also has hyperparathyroidism that might be caused by malabsorption    
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.