Generalized Inflammation As A Symptom? (Plus, My Story)

[dopaminegirl]

Hello everyone, this is my first time posting, but I've really learned a lot from these forums and they've really helped me get through the past year. Skip to the bottom for my question, but I thought I'd give a little background.

 

My story definitely isn't as bad as some. About a year ago I started having some GI issues following a mild virus and through trial and error I figured out that I seemed to do well if I avoided wheat. At first I thought it was a FODMAP thing, but that didn't really pan out. I was gluten free for about two months before I thought it might be good to get tested, my well meaning doctor said a one week gluten challenge should be enough to give me antibody levels. I have no idea if two months is long enough to wash out your antibody levels, but if it is, I know one week certainly isn't enough to bring them back up. (I also wonder if it it's possible that my celiac, if its celiac, was in really early stages, so I might not have built up enough antibodies in the first place for it to be detectable.)

 

Anyway, the test came back negative and I decided to keep avoiding gluten because that one week of gluten made me feel awful, my avoidance isn't perfect though: we didn't clean out our kitchen, and I never worried about cross contamination. Fast forward a couple months, I was still having some GI problems. I've developed what would later turn out to be an ulcer, I've got chronic alternating constipation and diarrhea (super fun: I wonder which one it will be today?) and never mind the bloating and gas. I finally got an appointment with a GI doc (if anyone needs a recommendation in the Ann Arbor, MI area this guy is AWESOME and totally worth the wait). He ran a bunch of tests checking for autoimmune and inflammatory markers, as well as a couple hydrogen breath tests. The only things that came back were that I'm lactose intolerant and my liver enzymes were elevated. Because of the liver enzymes were up, he had me get an ultrasound, and my liver is fine. My ulcer pain was still pretty bad so he did an endoscopy. They found the ulcer, but it didn't look to bad and appeared to be healing, and I had intraepithelial lymphocytes in my gut (I believe this correlates with MARSH stage I on the celiac scale, but it's not exclusive to celiac). 

Skip forward another couple of months, I've been taking omeprazole and the ulcer pain is mostly gone, but I still get GI distress often enough that exercise is out of the question (which is driving me nuts) so I send another message to the doc. He repeated a lot of the blood tests. Nothing unusual, by liver enzymes are back to normal, but he decides that he'd like to do a colonoscopy to rule out occult crohn's (crohn's that doesn't act like crohn's). Then he said (and I love the language here), "While we're in there we might as well do an endoscopy and see how that ulcer is healing." So I've got a dual procedure coming up May 1. I'd been wondering if maybe my previous celiac test results weren't really valid, so I explained the situation to my doc (that test had been with a different doctor), and asked if he thought I should do a gluten challenge before the procedure in order to really rule out celiac once and for all. I'm worried that incomplete adherence to a gluten-free diet may be responsible for my continuing problems. He thought that was a great idea (I LOVE this doctor. He LISTENS), and just to be sure, ran a celiac genetics test on me. That came back positive for the predisposition so I embarked on a six week gluten challenge. 

 

I did not realize how amazing I'd been feeling until I started eating gluten again. I'm in graduate school, and immediately pre-gluten challenge I was working 12 hour days and feeling good about it. I was feeling clever and productive and I thought I'd just finally hit my grad school stride, or the end of winter was having a positive impact on my mood. Then the gluten challenge and I'm back to the days where I schedule my experiments so that I always get done by 5, because the thought of staying later is agony. So no, It's not that I finally developed the mental fortitude or the drive or the motivation, it's that I was finally healthy enough for those things to come out of the closet. 

 

So: my symptoms that I've noticed since it all began. 

Did you know that it's NOT normal to get a headache EVERY day? I DIDN'T. Not until I went gluten free. Once back on gluten I get a low grade headache at least once a day. For the first week, it was constant. 

I've also had a lot of aches and pains: arthritis-like pain in my knees, hands and shoulders. Strange muscle spasm/cramps in my neck that would require me to lay down for a while until my muscles had calmed down. My hamstrings hurt like I've been working out, they feel super tight. I even got a super fun and mildly terrifying chest pain that radiated up in to my face when I breathed. It was short lived, only once or twice over a couple of days, but from what I've read I'd guess that it was pleurisy (inflammation of the chest lining around your lungs).

Also, pretty sure my hair is shedding faster than normal, but that might me all in my head. 

If I eat my daily dose of gluten too close to bed time, I can't sleep because I feel like I'm going to vibrate out of my skin. Best way I can describe is that it seems like restless legs syndrome, except it's "restless whole body".

Then of course there's my stomach. I don't have diarrhea persay, but I do have to make multiple trips to the bathroom a day. I feel the desperate urge to go, but barely anything comes of it. I'm ridiculously constipated, constantly bloated, and occasionally I get stomach cramps and/or nausea. And I'm gaining weight like it's nobody's business, which I DO NOT need. 

The aches and pains were the worst early on in the challenge, though they came back yesterday and I felt like I'd been hit by a truck (maybe I gluten OD'd?). The stomach stuff didn't get really noticeable until about two weeks in. Exhaustion and brain fog has been ongoing and unpleasant.

 

So finally, to get to my question: does anybody else get random symptoms who's only common thread is inflammation? Does gluten just seem to trigger inflammation all over? Anybody have any ideas? Thank you!

 

Two more weeks of this. Celiac or no, I know that I'm cutting gluten out of my life and I am EXCITED. Or I would be if I could get up the energy.

 

 

[dopaminegirl]

Forgot to add: I've been treated for depression anxiety for about 6 years. It's mostly under control, but once the challenge started it reared it's ugly head again. 

[cristiana]

Welcome to the Forum.

 

Did your doctor say what level was high to indicate inflammation?  In my case it was elevated globulin levels which I think is a pretty odd presentation for celiacs, but my gastroenterologist said it was unusual but it did happen.  

 

At the time my obvious symptoms were anxiety and anemia.  I had suffered from migraines for years but never made the association.  I had odd twitches and tingles but thought it was the anxiety.  I'd always had a 'nervous stomach' but thought nothing much of it.

 

Once on iron the inflammation went back to normal, but a few months later I started to get diarrhea and the inflammation was back on my blood readings.   It was then that my doctor tested for celiac.

 

There are lots of different inflammation markers - globulin is only one of them.  When it is elevated the doctors send it off for elecrophoresis, a test to see if there is anything specific going on.  But in my case there was nothing obvious, it was interpreted by the doctors as 'generalised inflammation'.  I wonder to this day if the diarrhea hadn't started whether they would have ever tested for celiac.

[celiac sharon]

I was diagnosed a little over 4 years ago. I had been to the doctor complaint of intense fatigue, terrible joint pain, daily headaches, in fact I too had no idea that having my head hurt constantly wasn't normal. I can't say I was exactly depressed, but I did have a very firm belief that I was not going to live much longer. What he found first on my blood work was critical iron deficiency and anemia which sent me to the GI doc. When I told him I had Hashimotos and that I believed I had something autoimmune, he decided to do both endo and colon, but what he Believed, it was obvious, was that it was cancer. He said though that we would check for celiac. Then my very sweet doctor patted me on the cheek and said he did not believe it was celiac because celiacs are skinny and I was 80 pounds overweight. But at least he was open minded eno ugh to check, because the biopsy of course was positive. He was so surprised that he still sent me for a whole celiac panel that was crazy positive. Still love this doc bcause he was open minded enough to check even though he doubted. He then told me a story of a patient whose inflammation was so bad that she ended up in the hospital with so much inflammation around her heart she had to have a pericardial window. Finally they diagnosed her as celiac, went gluten free, no more problems!

My only belly symptoms were bloating and constipation. Things I also took for granted. I thought the bloating was just from my high fiber diet! Once gluten free, I felt so much better I had no problems sheadding the weight. And if I accidentally get contaminated with gluten, joint pain, fatigue and weight gain from swelling and inflammation are my first symptoms Good luck! Frankly I hope you get a positive on your test, knowing is better than wondering in my book, and you will have the answer you need and know what to do. Because obviously you already know that gluten is no more for you.

[dopaminegirl]

Thanks Sharon. Your story definitely sounds familiar.

Cristiana, I'm not sure what you're asking. I have access to my test results so once I'm back to my home computer I can give you a more precise answer. Can you clarify?

Thanks!

[cristiana]

Definitely.  When you get a breakdown of your Liver Enzyme Tests you may see the words albumin and globulin.   Human blood contains blood protein - albumin and globulin.  As I understand it if globulin is above normal levels it might indicate chronic inflammation in an auto-immune condition or can simply be a response to an infection.  If either of these proteins increase above normal levels they will elevate your liver enzymes.  

 

There are other blood readings that might indicate inflammation, globulin is just one.  I am sorry - didn't mean to overcomplicate things.       It may well be that this wasn't the thing that was 'out' in your tests in any case.

 

After a few months on the gluten free diet, everything was back to normal for me.  It sounds like you, too, have an excellent doctor who is being very thorough.   

[dopaminegirl]

Okay, time for the medical history breakdown: test, normal range, my results

October 2014, at this point I'd been mostly gluten free for about 4 months

10/2/14 Westegren RBC Sedi Rate

 

0-20 mm

 

6

10/2/14 Metabolic panel (selected results)

Protein

6.0-8.3 g/dL 6.8 Albumin 3.5-4.9 g/dL 4.5 AST 8-30 IU/L 71 ALT <=35 IU/L 80 Alkaline Phosphatase 30-130 IU/L 92 Bilirubin, Total 0.2-1.2 mg/dL 0.3

10/08/14

Ferritin

6.0-155.0 ng/mL

13.3

Iron Level 33-150 ug/dL 116 Iron Binding Capacity 220-440 ug/dL 371 Percent Transferrin Saturation 20-50 % 31

 

Summary of other tests from that time: Negative ANA, normal ceruloplasmin, negative liver smooth muscle antibody, normal abdominal ultrasound, positive hydrogen breath test indicating lactose intolerance. 

At this point I cut out dairy entirely and continued to be gluten free. 

 

Then I went back in January to check on my liver enzymes

Protein 6.0-8.3 g/dL 7.0 Albumin 3.5-4.9 g/dL 4.5 AST 8-30 IU/L 31 ALT <=35 IU/L 24 Alkaline Phosphatase 30-130 IU/L 70 Bilirubin, Direct 0.0-0.3 mg/dL 0.1 Bilirubin, Total 0.2-1.2 mg/dL 0.4

 

My ulcer pain started acting up so in February I went in for an endoscopy

They identified the ulcer, and noted that it was healing. Everything else looked normal. Took biopsies to rule out H. Pylori and to check for Celiac (though the doctor knew that I'd been gluten free for a while at this point). Negative for H. Pylori, pathology report showed increased intraepithelial lymphocytes with normal villous architecture. 

Because of the intraepithelial lymphocytes he wanted to run more tests. 

Repeated Westegren Sedimentation rate, still within normal range

C-reactive protein was in normal range (they tested this one twice. This is where I started to realize how stumped my doctor is)

fecal calprotectin was elevated (pretty sure this result is one of the reasons he's still trying to find out what's wrong with me, though it's worth noting that this can be caused by taking proton pump inhibitors, which I have been).

normal CBC with differential

positive for genetic predisposition for celiac

 

So that's where I am at this point. I've gotten an idea of what my doctor's thinking just by looking at what test's he's ordered. Both the calprotectic and the intraepithelial lymphoctes could conceivably be caused by the PPIs I'm taking for my ulcer, but the PPIs don't explain my symptoms, and I still have no explanation for the elevated liver enzymes back in October. 

More fun inflammation symptoms: I've been having issues with an inflamed tail bone, which is problem I've had in the past, but not in a while (gee, could it be the gluten?). 

So there aren't any markers in my blood indicating increased inflammation, but ALL of those tests were done at a time that I was gluten free. I'm curious to see what it would look like now. 

[cristiana]

Thanks for posting this.  It would be interesting to see what it looks like now, as you say.  I think your doctor didn't do the exact same tests as my own, so I can't compare those readings with my own, but hopefully someone who knows about these particular tests might chime in.