Jump to content
  • 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):

Still in pain after a year?


SugarBiscuits

Recommended Posts

SugarBiscuits Newbie

Hello everyone I'm new to this site, I'm 21 years old female, and was diagnosed with celaic diease last year 2016. 

 

I had an endoscopy, this was a relief to me since I always had stomach pain everyday and been throwing up so much not knowing the reason.

Im strict on this gluten free diet started preparing my meals at home. If I do eat out I only eat at gluten free restaurants in my area. Which is rare.

I don't know what to do I have this lower stomach ache and back pain all the time I get nauseous everyday I wake up.  I've seen about 7 doctors so far and none of them know what to do.

im starting to get headaches and breaking out all over my arms. I feel this pressure in my stomach when I lay down. 

I have body aches and shivers. I'm scared this is something else separate from celaic diease.

Doctors want to put me on anti depressants but I think this is something else. Does depression make you feel this terrible?

i don't feel like eating anymore my doctor told me I lost a lot weight since last year but she's not concerned because it wasn't all at once.

 

im dropping a lot of pounds recently I just don't know what to do...does anyone else have similar pain?

 

thank you for reading I know this is a lot...


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



Celiac.com Sponsor (A8-M):



ravenwoodglass Mentor

Welcome. Have they rerun your celiac panel or done a repeat endo to see if you might have some gluten sneaking in somewhere? Are you eating oats or cereals like Cheerios, Lucky Charms etc? Many celiacs will react to oats the same as they do with the gluten in wheat.  Do you have a significant other who eats gluten? If so they need to brush their teeth before kissing as you can get glutened from kisses if they don't.

You say your arms are breaking out. Is this an intensely itchy rash? If so it might be the skin form of celiac, DH. Those of us with DH often find we are more sensitive than folks who don't have it.

Have you eliminated gluten in your toiletries like shapoos, conditioners, lotion and make-up (if you use)?

Some of us have other intolerances. For example soy protein or flour gives me intense stomach pain. If you do consume stuff with soy you may want to drop the items for a bit and then add back in when you feel better. The same applies to dairy products.

If you haven't already do read the Newbie 101 thread at the top of the coping section as it has a lot of good info.

I hope you can get to the bottom of what is causing you so much misery soon.

Celiac's Wifey Explorer

So sorry you aren't feeling well.

Ravenwoodglass gave a really great list of things to check.

I just thought I'd add, in case it is at all reassuring, that depending on the person, nerve damage and skin symptoms can take longer than a year to heal; if the rashes are DH, it can take up to two years on a gluten free diet for your body to clear it - 

Open Original Shared Link

Quote

The treatment for DH is a lifelong gluten-free diet. This means you will have to remove all sources of gluten, which is found in wheat, barley and rye, from your diet. Some people may also be sensitive to oats.

The time it takes for the skin rash to improve varies between people. Skin symptoms tend to take longer to recover compared to the typical gut symptoms associated with coeliac disease. It can take an average of two years for a gluten-free diet to take full effect, and in some cases longer.

I hope you will find a way to feel better soon.

Archived

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

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

    • Total Members
      134,077
    • Most Online (within 30 mins)
      10,442

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

    • Total Topics
      121.7k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • Aretaeus Cappadocia
      Sigh. I posted this yesterday based on the Safeway website. I went back again today to their website to double check. On the page where they are selling Vanilla Bean flavor, it has a distinct Certified Gluten Free label. Other flavors on the Safeway website didn't have the gluten-free statement. Today I went into the store. None of the flavors I looked at, including Vanilla Bean, have a Gluten Free statement. Is it safe? Who knows. The ingredients are either safe or nearly safe (some have "natural flavor"). There are warnings about "contains milk and soy" but not about wheat - this implies they are safe, but again, who knows. On the other hand, every flavor I checked of their Slow Churn line of ice creams has wheat as an ingredient. 100% not safe.
    • knitty kitty
      Do keep in mind that many of the newly diagnosed have lactose intolerance.  This is because the villi lining the intestinal tract are damaged, and can no longer make the enzyme lactAse which breaks down the milk sugar lactOse.  When the villi grow back (six months to two years), they can again produce the enzyme lactAse, and lactose intolerance is resolved.  However, some people (both those with and without Celiac Disease) are genetically programmed to stop producing lactase as they age.   Do be aware that many processed foods, including ice cream, use Microbial Transglutaminase, a food additive commonly called "meat glue," used to enhance texture and flavor.  This microbial transglutaminase has the same immunogenicity as tissue transglutaminase which the body produces in response to gluten in people with Celiac Disease.  Tissue Transglutaminase (tTg IgA) is measured to diagnose Celiac Disease in blood tests.  Microbial Transglutaminase acts the same as Tissue Transglutaminase, causing increased intestinal permeability and inflammation.   New findings show that microbial transglutaminase may be able to trigger Celiac Disease and other autoimmune and neurodegenerative diseases.   Microbial Transglutaminase is not required to be listed on ingredients labels as it's considered a processing aid, not an ingredient in the U.S.  Microbial Transglutaminase has been GRAS for many years, but that GRAS standing is being questioned more and more as the immunogenicity of microbial transglutaminase is being discovered. Interesting Reading:  Microbial Transglutaminase Is a Very Frequently Used Food Additive and Is a Potential Inducer of Autoimmune/Neurodegenerative Diseases https://pmc.ncbi.nlm.nih.gov/articles/PMC8537092/
    • Aretaeus Cappadocia
      There is a 10 year old post in this forum on Edy's and Dreyer's ice cream. The information is somewhat outdated and the thread is closed to further comment, so here is a new one. Edy's And Dreyer's Grand Vanilla Bean Ice Cream - 1.5 Quart is labeled "Gluten Free". This is a different answer than years gone by. I don't know the answer for any other flavor at this moment. On 1 May, 2026, Edy's website says: "As a general rule, the gluten in Edy's and Dreyer's® frozen dessert products is present only in the added bakery products, such as cookies, cake or brownies. We always label the eight major food allergens on our package by their common name. We recommend to always check the label for the most current information before purchasing and/or consuming a product. The exception to this rule is our Slow Churned French Silk frozen dairy dessert, which contains gluten in the natural flavors." https://www.icecream.com/us/en/brands/edys-and-dreyers/faq It seems that Edy's and Dreyer's are more celiac-friendly than they were 10 years ago. Once I found enough information to make today's buying decision, I stopped researching.
    • Aretaeus Cappadocia
      probably not your situation @Mimiof2, but allow me to add one more to @trents list of celiac-mimics: "olmesartan-induced sprue-like enteropathy"  
    • knitty kitty
      My dad had an Abdominal Aortic Aneurysm.  Fortunately, it was discovered during an exam.  The doctor could feel my dad's heart beating in his stomach/abdomen.  The aneurysm burst when the doctor first touched it in surgery.  Since he was already hooked up to the bypass machine, my dad survived ten more years.  Close call! Triple A's can press on the nerves in the spinal cord causing leg pain.  I'm wondering if bowing the head might have increased the pressure on an aneurysm and then the nerves.   https://gulfcoastsurgeons.com/understanding-abdominal-aortic-aneurysm-symptoms-and-causes/ Abdominal Aortic Aneurysm Presenting as a Claudication https://pmc.ncbi.nlm.nih.gov/articles/PMC4040638/
×
×
  • Create New...