New to gluten free lifestyle... How should I go forwards with doctors and testing?

[senioritchy]

Sorry for the long backstory, it all ties in, unfortunately. I first developed eczema after having my first baby, maybe 10 months post partum? It was everywhere, but especially on my neck and in my hairline. They prescribed some crazy strong ointments and it worked for most of the spots except for the neck, which I still have multiple spots there and in my hair. I went to several doctors hoping to get some tests (not diet related) to see if there was anything causing the eczema, and was told several times that I just have to get used to living with it and there's no point doing anything except for using creams. Last year I went dairy free in the beginning of the year because my son had MSPI, and my eczema was significantly reduced. Like it was amazing most of the time and I had some redness on my face that disappeared too.

Fast forward a bit and the IUD I had put in post baby #2 started giving me grief when my period came back. When I say grief this is the worst depression I've ever had, horrible anxiety for no reason, extreme fatigue, and I just felt overall not-so-hot. I ate whatever at Christmas, way too many chocolates lots of milk and I couldn't even get off the couch I was so tired and dizzy. I checked into the ER and they were so delighted that there was nothing wrong with me! I suspected my IUD but had to wait a few months to get it out and it was like night and day.

My eczema was pretty bad again though and I wasn't sure why. We'd already had some dietary changes so I was starting to get used to cutting out of the diet (salt for FIL, MIL has celiac but doesn't care so eats bread everyday as well as the dairy free). I tried gluten free after having several food and environmental allergy tests come up negative and had almost instant relief from the eczema and brain fog that had lingered around even after having the IUD out.

I gradually tapered gluten out of my diet, I haven't eaten anything like bread in probably 3 months now which seems like a mistake considering I only found out after going gluten free that for testing I need to have significant gluten in my system. I kept getting glutened over and over again, and realized I have to eat like a celiac now to get the results I'm looking for because there was just so much cross contamination in things like lentils, beans, spices and oats etc. So that brings me to now, where I'm 50/50 thinking I have eczema made worse by gluten problems (whether it's celiac or NCGS) or that I actually have dermatitis herpetiformis. I get some of the typical stuff like the bumps on the elbows and knees, but most of my eczema patches just look like eczema. I only get the bumps after getting glutened and these days it only takes tiny amounts of kitchen cross contamination to get sick and it puts me through the ringer for 3-4 days. My family doctor ordered the celiac test if I could muster the gluten challenge but I only made it a week and a half in and everyone depends on me to be able to keep up with laundry and cooking, not just sit like a slug and itch for months.

What do you guys recommend for testing / avoid getting glutened in my own kitchen? I've only eaten out maybe 2 times since going gluten-free because I'm terrified of cross contamination even at places that serve gluten-free food. I mostly eat like paleo/whole30/low carb ish because beans haven't been kind exactly, and rice isn't really that filling. If I eat carbs it's potatoes or sweet potatoes. I'm just so sick of explaining myself to everyone INCLUDING my actually celiac MIL that No I'm not eating a burger bun for the 50th time. And my kids deserve a mom that isn't constantly irritated and tired.

[Scott Adams]

Welcome to the forum!

It sounds like you've already figured out that you have non-celiac gluten sensitivity, and that you may actually have undiagnosed celiac disease. You are correct, to get a formal celiac diagnosis you'd need to eat gluten daily for at least 6-8 weeks (~2 slices of wheat bread daily) before taking the test, and then possibly get an endoscopy after that to confirm a positive blood test, which could mean another 2 weeks of gluten.

It does sound to me like you also may have DH, or both DH and eczema. If you have DH then you have celiac disease, but a dermatologist would need to do a skin biopsy for the DH to confirm this.

Since you've already self diagnosed your gluten sensitivity, and you are certain that gluten causes many of your health issues, it may not be necessary to get a formal diagnosis, but you would need to decide this based on how badly you feel when eating that much gluten on a daily basis, and how long it would take you to recover from it. Personally I would just stay gluten-free, because in the end, that is what any good doctor would recommend to you anyway, whether you had CD or NCGS.

Note that ~9% of celiacs have issues with even gluten-free oats, and if you eat oats, make sure they are gluten-free, as they are often cross-contaminated with wheat.

[knitty kitty]

Welcome to the forum!

You could get a genetic test to see if you have any genes for Celiac Disease.  Some doctors will make a Celiac diagnosis if you have genetic markers for Celiac and show improvement on the gluten free diet.  

Do get checked for nutritional deficiencies which occur in Celiac Disease as a result of damage to the small intestine.  

Was your IUD made of copper?  Copper IUD's have been known to precipitate zinc deficiency.  Zinc deficiency symptoms include atopic dermatitis and eczema, and fatigue. 

Hope this helps!

[senioritchy]

19 minutes ago, knitty kitty said:

Welcome to the forum!

You could get a genetic test to see if you have any genes for Celiac Disease.  Some doctors will make a Celiac diagnosis if you have genetic markers for Celiac and show improvement on the gluten free diet.  

Do get checked for nutritional deficiencies which occur in Celiac Disease as a result of damage to the small intestine.  

Was your IUD made of copper?  Copper IUD's have been known to precipitate zinc deficiency.  Zinc deficiency symptoms include atopic dermatitis and eczema, and fatigue. 

Hope this helps!

I did have a copper IUD, I honestly couldn't find much information about side effects from them online and my doctor didn't even list any side effects other than heavy bleeding for the first 6 months. I actually only thought the IUD could be a problem after I read a medium.com article about them. I'm booking a physical this week for my family doctor and will have him check for any nutritional deficiencies. Thank you for the reply!

[knitty kitty]

Seems a preexisting zinc or iron insufficiency can be made worse with copper IUD placement.

 

Zinc depletion and menorrhagia in Nigerians using copper T-200 intrauterine device

https://pubmed.ncbi.nlm.nih.gov/12343060/

"It is suggested that the low zinc status was probably responsible for the menorrhagia which was common among the study group using copper IUDs, which in turn was responsible for the anemia seen in more than 50% of the IUD users."