Headed For The Gi

[linnaea]

Hi folks,

I'm new to this board, and already appreciate the wealth of experiences and knowledge accumulated here. Thanks for the insight I've already gleaned, and here's my story to add to the collective narrative.

I've known about my wheat issues for about 7 years. After a lifetime of inexplicable headaches, I started gaining weight in my 20s. Not a lot, but it was inexorable and added up to about 20 lbs after 10 years. Eating the food pyramid and getting a lot of exercise wasn't helping. Not only that, I was constantly hungry eating that way. My dad, a farmer with an unsubtle resemblance to both Yosemite Sam and Sam Elliot in The Big Lebowski, offered, "Well, when you want to fatten a cow, you feed it *grain*, not protein or fat. Think about it." So I turned the food pyramid on its head: eliminated sugar, wheat, processed food in general, and minimized fruit and ate lots of eggs, chicken, fish, beef and more veggies than I ever had before. I lost 17 pounds in 3 weeks. When I ate a sandwich for the first time, it hit me like a sledgehammer for two days. Eureka! It was the bread! So I continued to minimize my contact with wheat on an ongoing basis. After a while, I noticed I didn't get colds as much or as bad, that weird rash on my face and hands cleared up, and I generally felt better. I did talk my son's pediatrician into giving me the food sensitivity test but it came back stone cold negative for gluten and gliadin. But from my little experience with Dr. Atkins, I don't need the test to know there's something wrong there.

Fast forward to today, and I sit here with my idiocy-induced rash (I had no business eating those Doritos, and Talk Like a Pirate Day is not a good reason to eat a doughnut) that is a sort of granular texture but not red on my jawline and eyelids but that looks almost poison-oakish on my hip. Since I glutened myself on Wednesday, I've felt mildly nauseated but I don't seem to get the GI distress (bloating, cramps, diarrhea) that others get. I also struggle mightily with brain fog and anxiety, particularly during the last 10 days before my cycle. I get numbness in my hands and have been on weapons-grade D3 supplementation to get me out of the cellar there - as a field biologist that hates sunscreen and a 5-year-old that loves the outdoors, I can't figure out where all my D3 could possibly be going. Since my self-diagnosis (PCP wasn't sufficiently interested to check me out; I'm shopping for a new one), I have discovered a second cousin with diagnosed celiac disease and from what I've read on this site, I think my mom has a good chance of having it too (always cold, rapid weight loss over the past 6 months (she's 5'8", went from 135 down to about 110), diarrhea, constant rumbly stomach, headaches from bread, vitamin D deficient, recent MCI diagnosis with language deficits, all this coincident with light smoking cessation). She's making an appointment too. It would be a gift from God if her dementia turned out to be from celiac.

So I'm headed to the gastroenterologist/celiac specialist at the end of October. I wanted to get in sooner and show off my rash, but they can't get me in any faster. I am aware I have possibly screwed myself by not getting a real diagnosis before eschewing the obvious gluten-containing foods 7 years ago, but I simply didn't know. I'm hoping that since I'm having reactions, that my current level of contamination is sufficient for the tests to work. I am not looking forward to chowing down on bread and such for 3 months to prep for my tests if that proves necessary, but I suppose if I have to dance with that devil, I will take full advantage of the turkey gravy, homemade French bread and Christmas cookies coming up.

My motivation here is to determine how militant I need to be with my diet. Regardless of what any tests say, it's obvious wheat is not good for me. However, there is a world of difference between avoiding Wheat Chex and making ersatz brownies and turning my kitchen into a clean room.

I'd truly appreciate hearing any feedback about my symptoms, particularly whether you local experts think this is full-blown celiac disease or (just) an intolerance that is annoying but not necessarily destroying my guts and mental health.

[Celiac Mindwarp]

Hi and welcome (I am new here too).

I can relate to a lot of what you say. I went wheat free 9 years ago, via Atkins. I am never going to get a positive diagnosis after lasting only 3 weeks on a gluten challenge. That was 2 months ago and I am starting to get over it.

I would say have a go at gluten if you can for testing, if having a diagnosis would make it easier for what you probably know in your heart is the answer to your militant question.

Sounds like either way you have a spell of gluten free ahead. Maybe a lifelong spell.

I hope you find some answers for your Mum. I think mine is probably celiac too, after year of apparent ME. I can't persuade her to get tested (Yet).

I guess we might see a bit of each other round here, so nice to meet you

[linnaea]

Nice to meet you, Celiac MW,

It's really hard to get excited about eating 20-30 grams of gluten a day for weeks so my innards are messed up enough to test positive. On the other hand, if I get messed up good I'll know for sure. The reverse of the elimination diet! The downside is all the clothing I'll have to buy due to the weight I'm sure to gain. Gah!

Where are you in the continuum of celiac/intolerance? What led you to suspect wheat was a problem? I'm fascinated by the weird array of different and occasionally contradicting and overlapping symptoms for this; it's a hypochondriac's worst nightmare!

Mostly gluten free isn't that hard anymore, due in part to a love of baking. I can replicate Starbucks' Petite Vanilla Scones, chocolate chip cookies, and banana/pumpkin/zucchini bread to the point my husband can't tell the difference, which certainly minimizes the deprivation. But I'd rather not have to pack a lunch to family gatherings and make an issue of it at staff lunches at work if I can help it. I don't like calling attention to my sensitivity unless among others with their own things they can't eat.

[Celiac Mindwarp]

Hi again

It is all a bit of a minefield isn't it??

I think I have probably been celiac over 20 years undiagnosed. I have a biopsy next week so might find out more then. I doubt it though.

I think I sort of suspected it was something more than a wheat intolerance for a few years but my doctor didn't even believe in wheat intolerance, and I think I didn't fit the outdated idea of underweight fading away as I am overweight.

The wheat thing I found by doing Atkins diet - the early stages reduce carbs drastically, and when I reintroduced it I had vomiting, D and migraines. Every year or so I would slip up, crave wheat and eat if for a few days until it wiped me out for a couple of days.

I started looking at celiac when I carried on with exhaustion as my kids started sleeping through, I lost some weight and felt no better. When I read a list of symptoms it was like reviewing the last 20 years of my life.

Everyone is different, some have few or no symptoms.

Some people just do the diet and see if symptoms improve, others try the Challenge. I tried it and failed, but I was VERY clear that I didn't imagine the symptoms!

You need to decide what works for you.

There is loads of help and advice here. It sounds like you might already be halfway to making your mind up.

The planning and taking stuff is a pain, but better than the alternative for me

Mw

[linnaea]

I'm amazed at your story - we've got a lot in common. I get bad headaches, a weird rash that looks a lot like poison oak when it's first breaking out, and weight gain. I was generally under 120 lbs in high school, under 125 in college, and by the time I hit my 30s I was struggling to maintain 140. I get some sharp stomach pain and low-grade nausea but no vomiting or loose/odd stools. I too get the craving back for a few days if I've fallen (or jumped, if I'm being honest) off the wagon.

The part that scares me is that I have a fair bit of fatigue, difficulty concentrating and other mental fog stuff. I thought most of it was related to having a 5-year-old that continues to wake frequently between 11 and 2 but now I'm not so sure. I *really* want my brain back.

Good luck with your doctor appointment, and I hope you get clarity. My appointment is in a month, but since it's with a GI doctor specializing in celiac, at least I'll get an honest look this time.

L

[Celiac Mindwarp]

Thanks

I am looking forward to having the appointment over with nom.

Great you have a celiac specialist. If you hang around the forums here you'll have loads of information and questions by the time you get there in a month.

Good luck, be great to hear how you get on

Mw