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

Gluten Free 5 Weeks Some Symptoms Getting Worse
0

33 posts in this topic

Yes, sadly some of us do get worse before we improve.  If you have not, remove dairy -- it is the most common intolerance for those with Celiac Disease.

 

Hang in there!

1

Share this post


Link to post
Share on other sites


Ads by Google:

Hi again ,

when I couldn't get up from the sofa , I drank the broth from the chicken , please ask someone to boil up a chicken for you so you can at least drink the broth ,

also your dietician can they prescribe food drinks for you whilst you cannot eat , I had some prescribed and they did help ,

plenty of water and the chicken broth will help until your doctors find out what the problem is for you

x x jiggles

0

Share this post


Link to post
Share on other sites

Wow!  We have a lot in common!  I recently posted a thread similar to yours asking for help.  I'm now six months out from diagnosis and I feel worse all the time!  And, like you, I continue to lose weight.  I haven't seen any blood, and I'm not in the bathroom quite as many times as you are, but other than that we are quite similar.  It seems like every week I discover something else that I can't seem to tolerate.  I've had two endoscopes a year apart.  The first showed "slight inflammation - non specific, and I was told that I didn't have celiac.  The more recent one "moderate inflammation", and this time I was told I tested positive. I can't find a protein drink either, so the dietician told me to try pea protein powder. I haven't tried it yet.  I've been drinking MuscleEgg for awhile.  You can order it online.  It's simply pasteurized egg whites that comes frozen.  I seem to tolerate it well.  I have an appointment with a new gi in a few weeks.  I'm hoping he can help figure out if there's an additional problem.  I hope you see some improvement soon.  Keep writing!  I'm so anxious (for both of us) to hear what you find out.

0

Share this post


Link to post
Share on other sites

My nutrient levels fell somewhat after I went gluten free.  They have since gone up again.  Keep on it you should get somewhere!

 

D

0

Share this post


Link to post
Share on other sites

Just an update for anyone who was wondering. My colonoscopy was completely normal so I was sent for a CT Scan to rule out lymphoma. I do not have lymphoma, however, during the CT scan they found inflammation near the end of my small intestine (not anywhere outside of the small intestine though) indicating Crohn's disease and recommended a colonoscpy to confirm. My GI, however, thinks the CT scan is a false positive because my colonoscopy was negative and has prescribed hysocyamine to stop the diarrhea. I am having a second opinion given by a separate hospital that has a highly regarded celiac program since I have many symptoms of crohn's including eye issues. I also dropped below the minimum sodium levels so I was tested for addison's disease too waiting on the results. My b12 also tanked and I am dumping more than half of my shot in 3 days or less so I was moved to every two weeks again. I think we are finally getting somewhere it's just slow going...

0

Share this post


Link to post
Share on other sites




I'll be thinking of you....

0

Share this post


Link to post
Share on other sites

This is old but I know when people google these or search the forums there aren't always follow ups when the problem was solved. We solved my problem, it was not crohn's or hidden gluten, I have fructose malabsorbsion as well as bit of a sorbitol intolerance. Ironically I figured it out at the gluten free expo because most of the samples were sweetend with HFCS or Fruit Juice and it left me sick as hell since I wasn't eating processed food the samples wreaked havoc on my insides even more so than day to day eating. I met with my celiac specialist GI shortly after and she confirmed it. At 4 months post diagnosis my ttg IgA went down and was a weak positive and both DGP's went back to normal/negative so I am following the gluten-free diet carefully. It is not SIBO it's just fructose malabsorbtion. So I am now Gluten free, dairy free, very low fructose/fructans, low sorbitol/polyols. Within 24 hours of going fructose and sorbitol free in addition to gluten free and dairy free I was feeling like a new person. Thank you for all of the advice here. Hopefully if anyone pulls this up with the same situation this info can help them.

0

Share this post


Link to post
Share on other sites

Very glad you found another piece of your puzzle and hope you continue to improve.

Thanks for the update.

0

Share this post


Link to post
Share on other sites

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
      104,091
    • Total Posts
      920,312
  • Topics

  • Posts

    • I laughed out loud at the 'little notebook' comment!😂 It has been interesting to see how much progress has actually been made over the past 10 years that there is even a notebook to be offered or a restaurant to eat in that will accommodate our 'allergy'. 10 years ago I feared that I would never eat in a restaurant again.  But the notebook comment is spot on.  Hopefully within the next 10 years restaurants will evolve enough to offer us a menu that clearly lists the delicious and extensive offerings that they have lovingly prepared just for us...and not just an ingredient list with nutritional values that take longer to read than War and Peace.   I am grateful that there are places to go that at least make the effort.  Who knows?  Eventually there may be restaurants which will have to offer menus with GLUTEN options available!
    • Thanks for posting this Adrien, it's a great list and I and others will appreciate the effort and the thought behind it. I loved my time in Malaysia and I'm glad I sampled all the food I could whilst I was still on an unrestricted diet. The good thing is that, like you say, some of the nice Malay foods are still ok. As a backpacker I survived on a lot of nasi goreng and laksa, nice to think if I return there I could still do the same Terima kasih!
    • I have posted on here before. DQ2, brother with celiac, DGP iGA was the only mildly elevated test. Was gluten-free so did 6 week challenge last winter. Negative biopsy. I am gluten-free now but do go out to eat. Prior to the challenge my health was good. Since then I have: Chest pain, pain between shoulder blades, periods of shortness of breath, heart palpitations, one instance of a heart arrythmia episode, neck is tender to touch on one side (they kept saying sinuses or TMJ which my dentist vetoed) ear ache, bowels never sink. Numbness and tingling. Blood pressure variations. Could be doing chores and feel dizzy and it might be 84/52.  not super low, but not typical for me if I'm running around the house.While other days I am mildly hypertensive. Recently lost 5 lbs in 8 days without trying. Recently electrolytes were low, alkaline phosphatese was low. Ferritin started dropping so started liquid iron 2-3 times per day 4 months ago. Primary watching that, I am not anemic but we are nowhere near iron overload either.  GI doc was a dick. Did not even know DGP replaced older tests and he was very condescending When I begged him for help recently and told me to get a second opinion which is exactly what I plan on doing.  I now have pain in my upper GI area. It is tender to touch. I had my gallbladder out in 97 along with a stone and infection in my bile duct. It hurts in this area. Pancreatic enzymes look fine, liver enzymes fine. Pancreatic ultrasound fine. I will now be doing a EUS Soon to look at bile duct, pancreas and liver.   so a typical day for me is that I might feel fine for a while and then suddenly feel like I'm going to pass out. really dizzy, numbness in odd places, like my body has been hijacked. I will typically eat a bunch of food something high protein and in about an hour or so I start to feel better. However, then my upper stomach starts to hurt in place of the passing out feeling. blood sugars are also normal. After getting the " it must be panic attacks" and condescending looks a million times my primary finally ordered an ultrasound of my sore neck and there is an abnormality in my thyroid which she says looks like possibly Hashti's. Except for one time, all my serum TSH tests were normal. We have more blood work on Monday. As I have not put on any weight and there are other symptoms that are closer to Graves.  Has anyone else had any thyroid issues that followed doing a gluten challenge?  where is your stomach pain? Do you have it above or below your belly button? Mine feels like it's in the pancreas area, like 2-3 inches above the belly button and when I push on it it's tender, but not all the time. sometimes i feel it in my back. 
    • Thanks for sharing with me.  I really appreciate it.  Honestly, after a glutening last summer (still do not know what glutened me), I did not eat out for a year!  The risk was too great as my healing time took 3 months (for symptoms to subside) and six months to regain lost weight.  Our recent vacation to Europe was worth the risk  as we traveled with our entire extended family, but we were extra cautious and ate only at celiac-approved places.  Otherwise, we "dined" at markets or ate the food we brought from home.  Thankfully, we did not get glutened (at least we don't think so!)  
    • I do not struggle with this and I was brought up the same way as you. I don't struggle because for many years off & on we didn't have a bathtub, only showers as well as this being therapy or medicinal for the skin - heck even for the muscles as I age. I figure I've earned my right to luxuriate or medicate with baths any time I've a mind to. My husband saw just how bad my dh got & NEVER begrudges me a nice long soak in the big soaking tub we now have.
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,122
    • Most Online
      1,763

    Newest Member
    ForeverYoung&GlutenFree
    Joined