Rash, Bloating, Indigestion. Gluten To Blame?! [Mildly Graphic]

[kleine annoe]

I hope at least one person gets the reference to #PotToBlame and is amused. Ahem.

 

TL;DR: I have a rash that looks like mild hives on my back and sides, as well as  itchy, fluid-filled bumps on my elbows, gas and bloating, and uncomfortably sticky BM that leaves me feeling like I have diaper rash. I also get fatigued and foggy. This only seems to happen in relation to my gluten intake. How do I know if it's Celiac, versus just a gluten sensitivity? Does it make any difference, functionally, which it is?

 

The Whole Story:

I grew up pretty much the way any middle-class American kid grew up in the '90s. I'm from New England, for context. Growing up, I ate pasta, Hot Pockets, bagels and doughnuts, sandwiches and wraps, rolls, the occasional pizza and breadsticks. Plenty of Cheez-Its and Triscuits. But I also ate meat, I ate tonnes of fruits and vegetables, plenty of dairy (my mother is the daughter of a dairy farmer, and I'm the first generation in many to spend even part of my childhood off the farm), even some sweets. I was healthy, to my knowledge, especially for having been born without a thyroid gland.

 

When my father got custody of me at 13, I went from an occasional package of Ramen or frozen pizza, to having nothing but those things in the house. A treat was fast food like McDonald's. Everything was gluten-filled. There were no fruits or veggies, no meat and rarely cheese. I gained weight, obviously. But I also ended up with severe digestive distress and exhaustion that no one could explain.

 

At 17, I got emancipated and moved out. For the first little while, I still mostly ate Totino's and store-brand boxed mac and cheese - I didn't know how to cook anything else, really. Slowly, I learned to cook. At 19, I had a bigger apartment with a huge kitchen, and I made whole turkeys and shredded the meat to use in what passed for a stir-fry of sorts - rice, frozen veggies, turkey, and jalapeno peppercorn vinegar. It wasn't particularly inspired, but I walked everywhere and I dropped weight and felt better than I had in a long time. I could focus, even if I used that focus mainly to watch House M.D. and anime.

 

When I moved South, the folks I lived with had a very different way of eating. It wasn't like living with my father; we ate meat and veggies, but everything included pasta or bread, tonnes of grease, Velveeta. And the portions were huge! I tried to explain that I really couldn't eat that much, but I was told that was nonsense; it was insulting if I couldn't finish my plate. In the heat of the summer, having grown up with much more temperate heat, I gained weight from staying inside in the aircon. I was at the clinic a bit by that point; scans showed me completely blocked up, and I was given laxatives, enemas, and instructions to clear myself out whenever it got painful. So that's what I did. I developed a spotty rash on my chest that got worse in the heat; I wrote it off the heat sickness.

 

Eventually, I got an apartment with the guy I was involved with, and we ate a bit better. But still, lots of pasta. I couldn't seem to lose weight, and when I started university at 20, I couldn't focus on my classes. I did well enough, but not nearly as well as I could have done. When we broke up, I moved on-campus and honestly, I was in a bad place. I barely slept, and I really didn't eat much. When I ate, I felt terrible, and I didn't realise that it was the gluten in the tortillas, the bread, everything. I tried to eat healthier and it still came back. The indigestion was terrible. So I drank Red Bull and passed on most food. How I functioned at all, I don't know. But I ended up dropping out of school and driving back to New England.

 

A friend of mine from when I was younger was trying to get out on her own, so we decided we'd get a place together. By then, my mother had moved down South to where my grandparents retired, so we decided to join them. We rented a place with a full kitchen, and we learned to cook together. I shared the love of spices given me by my ex; she shared her love of knowledge. I figured out that the common factor in all of my digestive issues was gluten. By then, the rash had spread, and occasionally, my elbows would get fluid-filled bumps that itched so badly that I scratched my skin raw. I braced myself.

 

My first gluten-free attempts were feeble. I got gluten-free corn pasta at Wal-Mart. I was 21, and I didn't read labels much then, except for calories; I didn't understand what things meant. But I still improved. I lost weight. I could think a little more clearly; the gas calmed down, and I wasn't as bloated. So I kept at it, and I kept improving. Little by little, I learned to scan ingredients for "contains wheat" and then for other things, too. I turned down pasta and bread, and at 22, I made gluten-free Thanksgiving for my family.

 

And then the first relapse came. "I'm doing so well. Surely, I can have a little." I've been through this cycle a number of times since then, and it never ends well. I'm fairly certain now, at 24, that gluten IS my problem. Why it wasn't a problem as a child, I don't know. I suspect that the overload while living with my father may have triggered it. I've also read a few suggestions to link gluten intolerance with thyroid issues, but since I never had a thyroid gland to begin with, I've not been sure if that's applicable.

 

Last night, to celebrate moving into a new place (with that same friend I mentioned - we've been living together for three years now), I gave in to my desire for "comfort food" and ordered a calzone. I regretted it before I even fell asleep, and I regret it more now. I realised that I feel alone in this battle. I know that there are tonnes of people who have gluten intolerance, but I don't personally know them. My girlfriend doesn't have as much of a reaction as I do, although she feels better gluten-free. We live in small-town New York right now, where she's from, and most people just don't know about gluten sensitivities. I actually had someone approach me and tell me that gluten-free is unhealthy for you!

 

My main question is still as I said above. How do I know if I have Celiac, versus a sensitivity, intolerance, allergy, whatever other labels? Is there a test? Functionally speaking, does it matter? I know I should just avoid gluten at all costs, but I think it's important to try to understand what this is.

 

Also, I wouldn't argue with a bit of moral support, if any of you know how I feel.

[michelley65]

So you pretty much diagnosed yourself as far as a gluten sensitivity goes.I did the same...after seeing doctor after doctor,with no answers..I finally realized that when I cut back on gluten I felt so much better..no bloating,gas,fatigue,ect.I told my doctor this and he then tested me for Celiac..it came back negative.He also tested me for small intestinal bacterial overgrowth...and said that's what was wrong.He prescribed meds...and they didn't work,so he once again tested me for celiac,and it came back negative.I did a lot of reading back then(2009)and found that bacterial overgrowth can actually cause the gluten sensitivity.I decided to go gluten free...and did wonderful for almost a year,but then I started introducing gluten into my diet again,a little at a time...and I am ok as long as I don't overdo it.Im not a doctor,but as far as I know,Celiac is a lot worse...I believe that you cant have any gluten in your diet at all.

[GF Lover]

The only way to know if you have Celiac is a gluten challenge, then blood work followed by an endoscope.  If your tests for Celiac are negative you may be Gluten Sensitive as there are currently no tests for that.  That's the quick and dirty of it.

 

Colleen