Help

[smashysworld]

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]

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]

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.