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):

Help

smashysworld
 Share

Recommended Posts

smashysworld Newbie
smashysworld
Posted

I need help. Three years ago I started to feel Sick and unwell. Started with gout outbreaks( at the time I was a vegetarian, I don’t drink or eat a lot of purines). The gout attacks got worse, I was put on allopurinol. A few weeks later I started to get patches of itchy skin on my arms, they spread and the itching caused me to scratch and so the whole cycle began of itch, breakout and scratch began. The docs put me on steroids, it cleared up, I stopped taking the meds and a few weeks later it appeared again - you know the drill.

Then other symptoms started, brain fog, headaches, joint pain, fatigue, weight gain, terrible gas, bloating, constipation etc etc. I saw allergists, rheumatologists, oncologists and dermatologists. The fever a/nd chills I had some days were awful. I had hundreds of blood tests over a period of two years and nothing came back apart from high inflammation. I tested negative for celiac three times now. My mum had celiac and my dad has rheumatoid arthritis.
One day it was so bad I was bed ridden, I ate some lunch and had a reaction to something, I looked at what I had eaten and I had eaten a dressing that had Wheat in it. I made the decision there and then to give up gluten, within a week I noticed my skin cleared up, headaches had gone, I felt alive. A few weeks later I noticed my itching returning, I did some research  and found out dairy allergies were  also linked to people who were gluten intolerant and so I gave up dairy.

Everything has been great until the last few weeks, I have started to get itchy again  and I now cannot wear deodorant with aluminum in it. I am freaking out as I am still negative for celiac but my symptoms are returning and I just don’t think I can take another indefinite period of struggle.

The doctors are hopeless - my doc says he thinks it is hyper eosinophilia syndrome, but he has no idea why.His answer is to put me on steroids forever.I am fighting it. I just cannot accept that a person who has never had allergies in her life ever suddenly is struck down with allergies to multiple things, it’s just too weird to me. 
 

Amy advice will be helpful. I need to know I am not on my own.

 

Thanks

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

Celiac.com Sponsor (A8-M):


Jays911 Contributor
Jays911
Posted
On 7/2/2022 at 9:22 PM, smashysworld said:

I need help. Three years ago I started to feel Sick and unwell. Started with gout outbreaks( at the time I was a vegetarian, I don’t drink or eat a lot of purines). The gout attacks got worse, I was put on allopurinol. A few weeks later I started to get patches of itchy skin on my arms, they spread and the itching caused me to scratch and so the whole cycle began of itch, breakout and scratch began. The docs put me on steroids, it cleared up, I stopped taking the meds and a few weeks later it appeared again - you know the drill.

Then other symptoms started, brain fog, headaches, joint pain, fatigue, weight gain, terrible gas, bloating, constipation etc etc. I saw allergists, rheumatologists, oncologists and dermatologists. The fever a/nd chills I had some days were awful. I had hundreds of blood tests over a period of two years and nothing came back apart from high inflammation. I tested negative for celiac three times now. My mum had celiac and my dad has rheumatoid arthritis.
One day it was so bad I was bed ridden, I ate some lunch and had a reaction to something, I looked at what I had eaten and I had eaten a dressing that had Wheat in it. I made the decision there and then to give up gluten, within a week I noticed my skin cleared up, headaches had gone, I felt alive. A few weeks later I noticed my itching returning, I did some research  and found out dairy allergies were  also linked to people who were gluten intolerant and so I gave up dairy.

Everything has been great until the last few weeks, I have started to get itchy again  and I now cannot wear deodorant with aluminum in it. I am freaking out as I am still negative for celiac but my symptoms are returning and I just don’t think I can take another indefinite period of struggle.

The doctors are hopeless - my doc says he thinks it is hyper eosinophilia syndrome, but he has no idea why.His answer is to put me on steroids forever.I am fighting it. I just cannot accept that a person who has never had allergies in her life ever suddenly is struck down with allergies to multiple things, it’s just too weird to me. 
 

Amy advice will be helpful. I need to know I am not on my own.

 

Thanks

 

Jays911 Contributor
Jays911
Posted

I have four autoimmune diseases plus ataxia. My guess is you have a non-celiac response to gluten. Has the gout subsided?  Any neurological symptoms?  Depending on where you are located, you need a major medical center. I am in Omaha, and our UNMC docs have really rescued me. There are great places at Mayo, in Houston and Cleveland. Blessings. 

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
 Share
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...