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):

Need Help/advice

Heidi26

Recommended Posts

Heidi26 Newbie
Heidi26
Posted

Hi.

My name is Heidi, I am 26 years old and I am from Norway. I am reaching for help and advice.

First some background history:

 

I have type 1 diabetes and a skin condition called Necrobiosis Lipoidica - both are auto immun conditions. Last december I ate a lot of bread for lunch (for about a month and a half i think) and started noticing different things.. For the record - I have never eaten a lot of bread before, I usually have eaten crips bread, salad and such for lunch. My dinners have been "normal" with a lot of meat, fish, greens and vegetables, and not a lot of gluten have been consumed every day. 

 

At the end of december I started to notic that I have becom very tired and lacking energy, dark sircles under my eyes, my stomach was bloated and alternating between constipation and diarrhea, a lot of gas, I had a head ache evry single day accompanied by a stiff neck, and I noticed that I was feeling "sore" and "achy" in my arms/arm-muscle (it's hard to explaine). I also was swetting tremendously at night when I was sleeping. So I used google, and ended up at this forum - I started reading. Many was having the same issues that I was experiencing.

 

I had my yearly visit with my endo in January (because of my type 1 diabetes), and I took a bloodtest for celiac. It came back negativ. I went to the hospitable and took a biopsy of my intestines - it was also negativ. I also took bloodtest for metabolic diseases - all negative. I startet a gluten free diet all by my own, and I quickly became better, and all the issus went away. I have now been gluten free for about 7 months.

 

In january it's time for a new visit at my endo's office, and I have started eating gluten again (started saturday). The head ache is back, the gas in my stomach is back, my stiff neck and "sore" arms are back... Just waiting for the rest to come. So it is clearly that I am reacting to gluten.

 

My question for you is: Can it be that I have celiac, and that I had not been consuming enough gluten before the bloodtest and the biopsy in january? I probably had to slices of bread for my lunch for about to months. 

Would a normal diet where you only eat gluten in dinners, sauces, crackers and similar enough that celiac shows up on a bloodtest? Or do you have to eat the two slices of bread each day..? I know that the my type 1 diabetes gives me a higher risk at getting celiac. If I have celiac I want it confirmed, both for my own sake and because Norway have a financial aid where you get about 300 USD every month because gluten free food in so expencive in Norway. But you only get this aid when you have a celiac confirmed by biopsy.

 

I have read about non-celiac gluten intollerance/allergy - does anybody know if there is a correlation between type 1 diabetes and non-celiac aswell?

 

Thank you, and sorry for any typos - English is clearly not my native language :-)

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

Celiac.com Sponsor (A8-M):


nvsmom Community Regular
nvsmom
Posted

Your English is very good.  :) Welcome to the board.

 

The diseases most commonly associated with celiac disease is diabetes (type 1) and Hashimoto's thyroiditis, so I think you were smart to get checked for celiac disease.

 

It is possible that your tests were falsely negative.  Celiac tests, blood tests and the endoscopy, all miss up to 20% of celiacs. They are not perfect tests.  It is always a good idea to have as many types of tests run as possible so the disease is more likely to be caught.  The full celiac blood panel is:

tTG IgA and tTG IgG (tissue transglutaminase)

DGP IgA and DGP IgG (deaminated gliadin peptides)

EMA IgA (anti-endomysial)

total serum IgA - a control test

AGA IgA and AGA IgG (anti-gliadin antibodies) - older and less reliable tests.

 

These tests are supposed to be the most accurate if you have been eating 1-2 slces of bread per day (or the equivalent) in the 2-3 months prior to testing.  The endoscopic biopsy only require 2-4 weeks of eating gluten.

 

This report discusses how good the tests are from pages 10-12: Open Original Shared Link

 

Do you know what tests you had done?

 

I do not believe there is a correlation between non-celiac gluten sensitivity (NCGS) and diabetes, but I could be wrong.  Celiac disease is an autoimmune disease but NCGS is not, although it is an immune response to a food the body is sensitive too.  I think NCGS can make the symptoms of other illnesses worse because of the inflammation it causes, and it also makes almost the same symptoms as celiac disease.  Those with NCGS must avoid gluten just as carefully as a celiac.

 

Best wishes.

Archived

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

Go to topic listing
  • 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
      Edy's and Dreyer's ice cream

      By Aretaeus Cappadocia · Posted

      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
      Edy's and Dreyer's ice cream

      By knitty kitty · Posted

      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
      Edy's and Dreyer's ice cream

      By Aretaeus Cappadocia · Posted

      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
      EDG 3 years ago fine, now it shows focal villous blunting,

      By Aretaeus Cappadocia · Posted

      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
      Terrible Neurological Symptoms

      By knitty kitty · Posted

      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...