Have soms questions

[Nikita200]

Poepie that have gluten allergie always have like pox on their skin ? Or no string attached?

You born with gluten allergie? Or not?

Thanks

[GFinDC]

Hi Nikita,

Welcome to the forum!

Some people with celiac disease also have DH (dermatitis herpetiformis).  Not all have it, but some.

Some people do seem to be born with celiac disease or get it very early, but many more develop celiac later in life.

Celiac disease is not really an allergy, but is an auto-immune condition.  Allergies involve IgE reactions, while celiac disease involves IgA and IgG reactions.

[Awol cast iron stomach]

Hi Nikita,

Welcome. I have had gi issues all my life.

Since removing gluten out of my life, i realized that symptoms that plagued me at 5 are connected to gluten and my immune system. At 5, I get where my symptoms would have confused Dr's as not being celiac.  In my early 20s is when I think someone should have been onto it. I was misdiagnosed as IBS back then by symptoms only no one every checked my gi tract just wrote IBS in my file. I began to see alternative non western medicine Drs to help me with the symptoms. I struggled with not knowing what it was, bu t still trie d to manage it.

While in my 30s is when things got really bad and multiple organ systems began simultaneously being impacted it was a busy time of being a mom and having high risk pregnancies and complicated "outside the norm" deliveries. I really did make the rounds at 33 trying to get someone to figure it out ataxia was truly becoming a problem. I went to general dr, dermatologist, immunologist/allergist, and even had gastroenterologist who did a colonoscopy (only due screening due to a relatives condition not celiac).  The Drs During this time I suspect had written it off as stress in my head not immune and gi issues. The perpetual lightheadedness of ataxia confuses Dr e in my opinion and well bumping into things is just a clumsy patient. My concern about thyroid showed nothing, but I swore it was off likely subclinical.?

 Shortly after moving to a new town my new Dr discovered I was vitamin D deficient and treatment with that helped, but wasn't a cure all. It helped some of the inflammation for sure. This Dr was the closest to figuring it out discovering the D deficiency , but moved to medical education field and left her practice by the time I read an article one day that many IBS patients are misdiagnosed celiacs.

Finally at 38 I was experiencing neuropathy and went off gluten myself ( what we are told NOT to do) but desperate circumstances require desperate measures. I was getting neuropathy and that was super scary. 

Then one day I got badly glutened at my sister's 50 b day celebration event. The waitress knew I was gluten-free , As I called ahead etc all the things we are suppose to do, but I now realize she thought it would be fun to serve me gluten instead. ?

 I was so ill I ended up going to a new allergy/immunologist who referred me to a specialist with a team, someone actually who was willing to look at me as having food issues. While she couldn't undiagnosis those former misdiagnosis of the past. She didn't find current evidence of those last multiple conditions , they did all fit into one new all encompassing diagnosis, the one that brought me here to celiac.com

So yes I feel my symptoms started young and grew worse with age possibly because of the fact I was misdiagnosed.  I do admit then I didn't fit the old fashioned celiac standard, but I do believe if Dr's were more knowledgeable about celiac 25 plus years ago, they should have been testing me in my early  20's. I wish I knew before my children were conceived but.....

In the end we now have a gluten-free house. It is entirely gluten free and while I hate getting cc ( exposed to gluten inadvertantly) and massively try to avoid it. ( I go out for no one's b day ever etc) Any cc confirms the symptoms I have I had a long time ago, and were always this. 

I am a DH rash celiac , my scope showed changes, autoimmune infiltration, and inflammation of gi, espohagus, stomach.  I couldn't do more than a 6 day challenge. Ideally they want 12 weeks. I did have skin issues growing up hives, eczema, puppp rash during pregnancy, keratosis pilaris. Now being a very strict gluten free gal it is very apparent upon exposure i am a DH celiac with gi issues, just not a gold standard "marsh" celiac. I leave the typical gold standard celiac to my paternal cousin, my body likes being different.?