Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

Back On Gluten For Scope
0

1 post in this topic

Well, I was off gluten for about 4 - 5 weeks, then got the letter to go for my endoscopy and go back on gluten.  So I've been back on for just over 2 weeks.

 

My family doctor diagnosed me back in January based on my symptoms, family history and the tell tale positive blood  panel.  She was going to order an endoscopy to check on damage due to the years of reflux but it can take months to see a specialist in Northern Ontario.  Sure enough, the appointment notice came back for June 11.  That was six months away, but no mention of going back on gluten. 

 

Then in late February, I got a new letter... the specialist (GI) reviewed my case, scheduled me in for March 21 and was directed to go back on gluten.  Almost like a reprieve, eat the foods I would forever have to stay away from! :)

 

The first few days were horrible.  I suffered heartburn and indigestion, bloating, gas,a fullness from my throat to my bowels.  Blah.  Then the joint pain started, the stairs are again hard to navigate normally, step by step again.  I want to sleep all the time, but when I'm in bed, I toss and turn and start the nightsweats.  My face has returned to the vibrant red that I was so happy was gone!  Headaches are oh so wonderful!!  Geez, I'd almost forgotten about that numbness that showed up once in awhile on my cheek!  And the list of symptoms goes on...  I made a comment to my husband that I can't wait to go gluten-free again but I vowed to perservere until the endoscopy. 

 

HOWEVER, I went out of town last week and forgot to take my iron pills.  I was still eating gluten foods but my stomach felt somewhat better.  Still some bloating but a lot of gas,  heartburn and indigestion, but is less intense. LOL there are times I'm afraid to walk or move suddenly for fear of a gas slippage, thankfully so far it's only happened when I've been alone or only in front of hubby :D !   I haven't taken the iron pills since last week but am wondering if maybe they've been contributing to my intestinal discomfort.  In the past, I've taken them with food, without food because I suspected a correlation.  I keep wanting to take one, just to see but I'm afraid of getting that awful intestinal feeling again.  I can tolerate the lessened intensity of the symptoms because I know it's only temporary until my scope is done.

 

All other symptoms are getting worse though, like the joint pain.  And for some reason, even being on gluten, my bm's have changed.  I have been a sufferer of constipation.  Now I am going a lot, not diarhea, but loose(more foamy), urgent and not pleasant aromatically!  This is gross I know, but when I have a bm at work, I am embarrassed and hope no one else has to go after me... and I am always multiple flushing to clean the residue from the toilet bowl. :wacko:

 

I don't think being off gluten for just over a month will show significant healing because I went years believing something was wrong based on my deteriorating health, but doctors could never find anything, nor would they even consider I was celiac...weight gain isn't celiac related, so they said!

 

I'm hoping my scope shows villi damage and nothing else wrong!  And maybe tomorrow I'll try the iron pill and take it from there.

 

And that's just me needing to share, discuss, vent.  Hubby must be getting tired of me going on and on about this "celiac thing" and I think I need to "talk" with people who understand, can relate. 

 

And for that I say thank you!  Thank you for this wonderful forum and the excellent information and sharing of experiences!  This forum has become my reading material... Who needs "Fifty Shades of Grey" when this is better reading for us celiacs? :D  

0

Share this post


Link to post
Share on other sites


Ads by Google:

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      104,365
    • Total Posts
      920,552
  • Topics

  • Posts

    • Well, I am stressed to the max. I just spent 3 days in the hospital with D and stomach pain, dizziness, chest pain, generally unwell. Then another trip to the ER on top of that. My protein was low and my RBC and hemoglobin dropped below normal in 3 days. Not terribly low, but below normal. I also had metabolic acidosis which still confuses me. I usually eat every 2-3 hours despite it causing pain to keep my energy up and was unable to eat that frequently in the hospital. I usually carry protein with me and had been taking liquid iron which I stopped a few weeks ago because my new endo is not a fan of iron supplements. As soon as I got home from the hospital I started with my protein drinks and blackstrap molasses for iron.  I now have bilateral mild pleural effusions and a nodule on my left lung, which hopefully is nothing, but was not there on a CT back in March. In addition, my left adrenal gland, which also appeared normal in March, is calcified and the report indicates this is most likely due to a previous bleed or infection. My colon appears tortuous (whatever that means) and we are waiting on colon/endo biopsies. I have been gluten-free since March except for cc so expect the biopsies to again be negative.  My primary care is useless. I am in the process of getting a new one I will see on the 7th but need the current one to fill out FMLA paperwork because I both physically and mentally need time to recover. I will have to go off of payroll for 2 weeks but I think I need to. I called the primary's office today to discuss the hospital tests which she does NOT have yet and to ask if we should/could start a low dose of prednisone because my body is attacking itself. My thyroid on ultrasound is also abnormal though my bloodwork thus far is normal. But it hurts on that side. The only reason the ultrasound was ordered is because I asked for it in the first place. The only reason I have started seeing an endocrinologist is because I found one myself. Anyway...I broke down in tears on the phone eith her today and she told me I was having a "manic episode". I have no history of mania. I only recently started taking xanax to help me cope with the stress of being sick. I was not sick until I did this stupid gluten challenge over the winter. My mother was in town and spoke with the doctor on the phone as well who was trying to get my mom to take me to a psych hospital. She also threatened to send the police to check on me. My mother assured her I was in no danger and we hung up the phone in complete shock. Admittedly, I was in tears when I called her and probably sounded like a fucking mess. But I believe I referenced the dropping iron, protein, fluid near lungs, enlarged thyroid and attacked adrenal gland then literally said "my body is attacking itself and I need help" to which she said, "I think you are manic". Lovely. If I was a mess before that phone call it was 10x worse when we hung up.  Anyway, this is the first night it has been extremely difficult to sleep. I admit my thoughts about my odd symptoms keep me up often recently. I mean, who the hell bleeds from or gets an infected adrenal gland?! I am sure it was another time I begged my primary for help. On a side not, the NP at the ER told me the primary should be putting these pieces together and communicating with my other doctors better. He then stated that he used to go to the same practice but left because the practice got too big and like a business. So I got some validation from that chat.  A melatonin or a .25 xanax usually does the trick for me to sleep but I am so disturbed about my interaction today, stressed at my health, stressed that my ex has our son so much because I am always sick (bless him for coming through), stressed that I have to go back to this awful doctor because I will need the FMLA paperwork before I see the new doc on the 7th.  8 months ago, I took a multivitamin when I remembered it and that was it.  End rant. Maybe now that it is off my chest I can finally sleep. 
    • Hi DKH0614, I use aspirin, Pepto Bismol, and peppermint tea or Altoids peppermints.  Pepto Bismol has a soothing effect on the gut.  Pepto Bismol also has aspirin in it.  Peppermint is helpful for relaxing smooth muscle tissue and getting gas out of the stomach. As per KarenG, you may be reacting to dairy.  Dairy has a sugar called lactose in it that some people with celiac have a hard time digesting.  You could try avoiding dairy for a few weeks to see if that helps.  Or try taking lactaid type pills when you eat dairy. It doesn't take very much gluten to cause an immune system reaction.  So it is important to avoid even traces of gluten if possible.  The stuff is hard to avoid sometimes if people around you don't understand how much a small amount of it can affect your body. Let us know if we can help with any  more questions, or if you have concerns we haven't addressed. And welcome to the forum! Also, if you subscribe to the thread (notify me of replies) you'll get an email when people respond to your thread.    
    • After a year and half, if you are eating gluten-free, you shouldn't be having pain from Celiac.  Perhaps you need to find out what is really causing your issues?  Dairy/ lactose is an obvious first place to look.
    • Hi! I am 15 and have been diagnosed with celiac disease for about a year and a half now and I am woundering what do some of y'all use to relive some of the abdominal pains that come along with celiac/gluten allergies?  ( Ibuprofen,  Tylenol, etc.) 
    • Hi Laurabella, Yes, you could have celiac disease!  It is important to keep eating gluten until all testing is completed, including an endoscopy with biopsy samples if the doctor recommends it.  The doctors usually do want the endoscopy.  The biopsy samples of the small intestine lining (4 to 6 samples) are checked for microscopic damage that indicates celiac disease.  Gall bladder problems can happen with celiac disease.  Your pain could also be from intestinal damage in any part of the small intestine. Some things you could try while you are waiting for your tests to be completed are stopping all dairy, and taking peppermint tea for gas in the stomach.  Celiac disease damage makes it hard to digest dairy sugar (lactose) and that can cause bloating and pain.  Constipation and diahrea are also possible fun symptoms. Welcome to the forum!
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,439
    • Most Online
      1,763

    Newest Member
    DKH0614
    Joined