Possible celiac...with a few questions, of course. ;)

rskapcat · Joined: 15 Jan 2008 Posts: 3

Hi. I may be, er, joining your ranks soon. I should hear back from the GI doc today to get my bloodwork results, and then I suppose we'll go from there. But I do have a couple of questions for the seasoned pros.

1) Before you went gluten free, did quantity matter as far as your symptoms were concerned? Or did certain foods set you off sometimes and not bother you at others? I find that I can eat certain things without consequence and then have to deal with the horrible bloated gas monster the next time I eat them.

2) I have a strange symptom that even my PCP couldn't explain. Whenever I get the horrible gas that won't dissipate, it is usually accompanied by a tenderness in my upper body and abdomen. It feels like I'm bruised, and it hurts my shoulders to wear a bra. Anyone experience that? If so, can you tell me what the heck it is?

Thanks in advance.

Becca

celiacmaine-iac · Joined: 19 Dec 2007 Posts: 836 Location: Maine

Hi Becca,
Welcome to the board.

rskapcat · Joined: 15 Jan 2008 Posts: 3

The tenderness is wacky, that's for sure! It happens after I drink certain types of alcohol, eat a lot of cereal, etc...
It's strange...it feels exactly like the time a doctor accidentally gave me a medication that interacted with another medication. It's like I'm toxic or something!
Thanks for your input. I'll bring up referred pain with the doc today. Smile

GF in UK · Joined: 07 Jan 2008 Posts: 37 Location: Willington, England

I guess everyone's story will be different, your mileage will vary, etc . . . Wink

But I have to say that for people with true coeliac disease (and I've been a card-carrying, dues-paying member for years), quantity doesn't matter (a bite of a biscuit, or an entire sandwich -- either will make us equally ill). That's why we can go out to eat a meal, get 'glutened' (some cross-contamination), and become very ill.

Nor does the source of the gluten matter for a coeliac (rye, barley, white flour, whole wheat); gluten is gluten, and if you have coeliac, you will become ill from any source of gluten. I can't say that's the same for people who are gluten intolerant (not coeliac), so maybe some of them will reply as well?

Also, a coeliac doesn't get over symptoms between breakfast and lunch (or whatever), so it's often hard to tell what's making us ill if we've had any gluten. In other words, it takes at least several days at minimum to recover from gluten, so even having some gluten every day or two would keep us in symptoms non-stop. Therefore, it would be hard to tell what's affecting a person once they've been 'glutened.' You can't say, "I just ate this such-and-such and that made me sick' if you had gluten yesterday -- you're still ill from that glutening the day before.

I have NO idea if that makes any sense . . . Laughing

I tried. Someone else will be along, I'm sure, with their experiences, which can, as I said, be completely different from others (and mine).

More importantly, best of luck with diagnosis! Hope things move along quickly however they go (coeliac or not) and you get answers and get healthy!

aklap · Joined: 02 Oct 2004 Posts: 8796 Location: WI, USA

celiacmaine-iac · Joined: 19 Dec 2007 Posts: 836 Location: Maine

Thanks for the clarification Al. You covered what I probably didn't say very well in my previous post. Becca asked about specific symptoms, and that is what I responded to.

Just to clarify, patients present with signs and symptoms (s/s). A sign is something that the medical practitioner observes, usually by means of medical test or examination. That is called objective data. A symptom is what the patient reports. This is called subjective data. A good practitioner diagnoses on the basis of both s/s.

In my post I was answering a question that Becca asked about symptoms. Since that is subjective data, there is no right or wrong answer. It just is what it is. Whether (and when) a patient feels ill when ingesting gluten is subjective. If the gluten ingestion damages a patient, that would be objective data, i.e. positive bloodwork, villi damage, DH, weight loss, etc. Therefore, a person may or may not feel ill at the time of ingesting gluten, but if they have celiac disease, damage will continue to occur. It is a pretty well established fact that every celiac presents differently, so there are probably as many answers to Becca's question as there are celiacs.

In my case (and I won't re-iterate my whole diagnostic story), I had negative blood work, negative skin biopsy, negative endoscopy. My doctor, however, diagnosed me with celiac disease anyway on the basis of her examination, my family history, my symptoms, and my responses to a GF diet and subsequent gluten challenge. She did tell me that a very small percentage of celiacs never test positive in any of the tests, but they do, indeed, have CD. I can't remember where I read this, but I remember reading that people whose disease manifests itself mainly in the form of DH often have normal endoscopy results. Who knows what the results would be 2 years from now, though? I'd rather not wait for total villi destruction.

And Becca, sorry I missed the part of your post where you asked for answers from 'seasoned pros' Embarassed

. I'm relatively recently dx'd, but have lived with this old body for 53 years, and spent the last year of it trying to get a dx. The ink isn't quite dry on my card, but I was hoping I could be of some help to you.

So Becca... I hope this clarifies my previous answer, and hope you got some answers from your doctor yesterday.
Again, best of luck,
Steph

rskapcat · Joined: 15 Jan 2008 Posts: 3

Thanks everyone for your replies. I'm *still* waiting to hear back from the doc. I'll let you guys know what I find out!

Oh, and I just meant more "seasoned" than me, Steph. No worries!

mrsppmrxky · Joined: 09 Oct 2004 Posts: 1500 Location: GF Kitchen

Hi and welcome to the group. I am not a 'card carrying member' since I don't have the official diagnosis and like Al, I don't know the secret handshake. LOL

When my stomach would bloat, up around my ribs would feel stretched and bruised. Now here is the weirdest symptom, on the inside of my elbows, would hurt and I would tell my husband that I felt toxic. (Now this was way before I had ever heard of celiac.) I would tell him that it felt as if the fluids in my body were too thick to go through the lymph nodes there. (I know, I am weird.)

My shoulders always felt bruised and shoulder bags were horrible to endure on some days. (I never corrolated that as a symptom of gluten.......could be/could very well not be related)

I think that once gluten is in your system and it is toxic to you, that it could affect you anywhere that your lymph nodes are located since they try to clean your system out.
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toothpaste · Joined: 11 Jan 2008 Posts: 44 Location: SC

Hi Becca,

My mum mentioned the referred pain, and yes, it is upper left abdomen. Sometimes it feels just nasty painful sick, and sometimes it feels like I've broken ribs. Going GF I've had MAJOR relief from that pain. I had had scans done, blood work, and when they yanked the old gallbladder, they did some exploratory surgery in there, and in all of that, they found nothing to explain why I was hurting. (which was a relief, because I have a rather overactive imagination and was thinking of many rather dire and dramatic and Anne-Shirley-Tragic circumstances.) Now, since being GF for almost 8 months, I'm only tender there, and it's intermittent. (Yay!)
This weird pain in various abominable abdominal areas of the body is something I've read a LOT about among celiacs, and many of them report going through the same crud trying to find out why they are hurting, with the same lack of diagnosis.

As for your first question, no, quantity didn't come into it before going GF. Sometimes I'd be sort of ok, and other times I'd spend week after week not daring to go much more than 10 feet from the bathroom. And in that time I was drinking ginger ale and eating saltines, thinking that would help settle my stomach. Ha! Shocked

After going GF, just touching trace amounts in the grocery store, breathing in in the baking aisle will set off migraines and heart palpitations. I've had a lousy week with the dermatitis herpetiformis (the absolutely gorgeous and fun celiac rash) when I grabbed the wrong bottle of shampoo at the store. (had wheat germ in it! Argh.) I only washed my hair twice with it, and now I'm raw from shoulders to hips and itching like crazy. Before going GF the reactions were NOT that bad.

My kids showed very few symptoms of celiac- both DS and DD have vitiligo, and DD is ridiculously small for her age (a pixie!) but when we went totally GF at home, when they were exposed to gluten at school or at church suppers they would get SO sick. It was like going GF most of the time helped their bodies figure out what it was they have. Now they react with minuscule amounts.

I hope this helps!
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GF since May '07, positive blood-test results.

GF in UK · Joined: 07 Jan 2008 Posts: 37 Location: Willington, England

GF in UK · Joined: 07 Jan 2008 Posts: 37 Location: Willington, England

nancw · Joined: 04 Oct 2006 Posts: 910 Location: Denver, CO

Lots of lymph nodes in and around the shoulder area, clavicle, neck. When the lymph system is in full attack mode nodes can swell and/or hurt. Your pain could be an autoimmune response of this sort.
The only other time I've had that kind of shoulder (and rib) pain is following laparascopic surgery where my abdomen was pumped full of gas. The pain from the dissapating gas was worse than the surgery part!
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Nance

gluten, dairy, soy, rice, yeast and 99% grain-free