Newbie In Boulder, Co

[MrBob]

Hi, all. I am a recently diagnosed celiac. I've been lurking here for a while, reading up first on my daughter's behalf, then on my own. Here's my story.

I learned about celiac disease this summer. My daughter came down with a flu-like illness in late May that held on, never completely leaving her since. She began rapidly losing weight, so my wife & I started looking into possibilities. We came up with celiac disease and had her tested, with all negative results.

Meanwhile, I showed up hypothyroid (TSH 7.4) in late May (I later asked for the antibody tests to confirm this as autoimmune - Hashimoto's thyroiditis). A couple of weeks later, I jammed a thumb. The pain was in disproportion to the injury and never went away. Instead, it progressed to other joints in my hands, feet, elbows, shoulders, and knees. My endocrinologiest ran labs for investigation of rheumatoid arthritis (my father is an RA patient, hence my concern). The labs came back negative, but my pain was increasing. By the time I got a referral to a rheumatologist, the sacral area of my back began radiating pain. The rheumatologist ran a broad panel of blood tests, including tests for celiac. My antigliadin IGA result showed a 'mild positive' of 21 (0-20 normal), but otherwise nothing was found on any other test. X-rays were also negative for RA. He gave me an NSAID & referred me to a gastroenterologist, who ran a full celiac panel (all negative, but showing the DQ2 & DQ8 genes and a vitamin D deficiency) as well as performing an endoscopy and colonoscopy. Both 'scopes' were negative. I later found out she took 9 samples from my colon (not my complaint, but she suspected colitis), but only took 2 samples from the duodenum. It's little wonder she missed any villi damage, although she noted duodenal ulcers, reflux, gastritis, and diverticulosis.

I had intentionally increased my gluten consumption leading up to the procedures, & all of my symptoms increased as well. I decided that I would try the gluten free diet immediately after my procedures. I knew from my symptoms and related illnesses that celiac was a strong possibility. After one week on the diet, my digestive issues lessened greatly, as did my joint & back pain. I am off my NSAID and do not face the pain as before. My endo had told me I was hyperthyroid before going on the diet (TSH 0.032) and was adjusting my meds, but I felt as sluggish as ever. After the diet, I am running on supercharged batteries. Further, I've had a problem with a dry & burning eye off & on since 2002 - around the same time my digestive issues started. It would wake me up in the morning, but would happen occasionally during the day. Daytime flares happened more often this year, sending me home from work with excessive tearing, light sensitivity, and swelling nearly shut. Measures I took never seemed to stop it completely. These symptoms increased with my gluten consumption as well, and subsided on the diet. On telling my doctor what happened, she diagnosed subclinical celiac disease.

After starting the diet, I got glutened twice from lunch at our local Chili's. Both times, my joint pain, brain fog, and general sick feeling started 6 hours later and lasted for 2 days. My digestive symptoms returned the morning after the meal. My eye flare ramped up the next morning, then erupted 2 mornings after the meal. It took until the morning after the eye flare before the symptoms all cleared up. And here I was concerned I'd never know if I accidentally ingested some gluten.

And my daughter? She's now lost a total of 50lbs but is responding favorably to the diet as well. I hope that she can avoid my family's autoimmune problems this way.

[Budew]

We came up with celiac disease and had her tested, with all negative results.

I showed up hypothyroid The pain was in disproportion to the injury and never went away. Instead, it progressed to other joints in my hands, feet, elbows, shoulders, and knees. the sacral area of my back began radiating pain. she noted duodenal ulcers, reflux, gastritis, and diverticulosis.

a dry & burning eye off & on with excessive tearing, light sensitivity, and swelling nearly shut. she diagnosed subclinical celiac disease.

glutened my joint pain, brain fog, and general sick feeling started 6 hours later and lasted for 2 days.

avoid my family's autoimmune problems this way

[kabowman]

I have joint pain as one of my symptoms - not sure to which intolerance but now when my knees and hands start hurting, I start looking at my diet and can usually clear things up within a few days. And, I am extremely careful because I am very sensitive. I get the brain fog from yeast and it can last for days. All my foods trigger digestive issues.

Good luck and welcome!!!!

[Guest nini]

welcome to the club!

[mandyann]

Hi Bob-

I'm from Boulder as well. I also have alot of joint and muscle pain which I'm finding is aggravated by what I eat. My next step is a trip down to Denver to the National Jewish Hospital for an appointment with an allergist. I'm going to go take a look at the food doc's site that was mentioned as well, it might be worth a trip to Co Springs. I've also heard that there is a Celiac support group in Boulder. Good luck.

Diana

[MrBob]

You decribe pain issues similar to mine. I think this goes beyond celiac. You may be reacting to other grains. I had elininated all except rice until yesterday. I still have the pain issue. I saw that all grains are linked by Lectin type. I hope eliminating rice will help with the muscle and joint pain that mimics arthritus.

Your reference to the eye problems make me wonder about iodine sensitivity. Celiacs with iodine sensitivity are often Silent celiacs ( few classic symptoms) Iodine can block the absorbsion of thyroid meds. Eyes were a big indicator to me that the thyroid was off. Try uniodized salt and see if your thyroid issues go away.

Delayed and prolonged reactions are normal. Keep a food diary with a symptom log to try to trace the food triggers other than gluten. You could be sensitive to other lectin types like nightshade. I am just begining to understand the classifications of foods by their lectin types. I have found that I react to the type related to grain, nightshade, and dairy.

You made no mention of your skin. Rashes, sores, itching? These problems can help you identify particular foods too.

Good luck. You soundlike you are headed in the right direction. There is a Dr. Lewey in Co Springs, "thefooddoc.com" is his link. Knowledgeable doctors are hard to find.

Ursula has some good links in her signature.

Thanks for this information. I'm taking a look at the links from Ursula. I plan to keep an eye on these other sensitivities after a while on the gluten free diet, especially if my symptoms persist in any way. My lower back still hurts, although not as much as before, & I've still got the strange mark between the sacrum & lowest vertabra that appeared in August. It looks like a cluster of broken blood vessels. I figure that it took almost 2 months for my joint pain to escalate from pain in my thumb to everywhere else I mentioned. If it persists beyond 2-3 months after removing gluten from my diet, I'll begin looking for another cause. This pain increased after my Chili's visits as well. I've been consuming rice products more often & do not notice an increase in my symptoms. In a couple of weeks, I plan to purposely consume some barley cereal to guage my reaction.

I don't know that I can see a correlation between my thyroid problems and the iodine issue you mention. I consume very little iodized salt, although my multivitamin contains iodine. If my thyroid also remains a problem, I'll be certain to give this a shot. I'm hoping the gluten free diet will knock off the antibody attack on my thyroid.

Skin issues - nothing major that I've noticed. I get some dry skin on my hands, but that's about it. I do get some pimple-like sores, (& have a painful one the size of a nickel right now on the back of my shoulder) so I should keep track of that.

I've read Doc Lewey's articles on ezine. I'm keeping him in mind if I can't get answers. So far, I'm not impressed with any of the 4 doctors I've seen in this area.

Thanks again!

Hi Bob-

I'm from Boulder as well. I also have alot of joint and muscle pain which I'm finding is aggravated by what I eat. My next step is a trip down to Denver to the National Jewish Hospital for an appointment with an allergist. I'm going to go take a look at the food doc's site that was mentioned as well, it might be worth a trip to Co Springs. I've also heard that there is a Celiac support group in Boulder. Good luck.

Diana

Diana,

Nice to 'meet' you!

I'm interested in what you find. I'll be watching for your results.

[diamondheart]

Hi Bob,

I live in Boulder too! I'm gluten sensitive, and mostly diagnosed through alternative medicine means and gene testing through Enterolab. Sounds like you have all the information you need to know to go gluten-free. I'm not sure the purpose of trying the barley cereal. It has gluten too, so you should stay away from it.

I have attended one of the local CSA Boulder-Longmont support group meetings. It was at the Longmont United Hospital, and one of the gastroenterologists from there attended. She seemed pretty knowledgeable about celiac disease, but I don't know about gluten sensitivity. Someone from the group recommended her to me, as well as my general doc recommended her. If you PM me, I can send you her name as well as the name of a doctor another friend of mine saw and was diagnosed with celiac disease in Boulder. I haven't seen the need for me to go see one of these doctors as I've been gluten-free for so long that none of these tests would show anything anyways.

Well, you are lucky you live in Boulder because we have a lot of options here for eating gluten-free, but you still have to ask at restaurants. There are a few restaurants that have gluten-free menus. There was a good thread going on this on one of the other forums here that I found.

Here's the link for the Open Original Shared Link. Their restaurant page also has recommendations for Boulder, though it doesn't have everything. The local group is only in contact via e-mail. I can also send you that info if you PM me.

Lastly, Open Original Shared Link is a great website for information on celiac disease and gluten sensitivity. It also has all the ins and outs of diagnostic testing. You'll also find information on the links between celiac disease and Type 1 diabetes and autoimmune thyroid diseases.

Claire

[jnclelland]

Wow - there sure are a lot of us Boulderites on here! Welcome to the club, Bob!

Just one thing that I wanted to address here:

Skin issues - nothing major that I've noticed. I get some dry skin on my hands, but that's about it. I do get some pimple-like sores, (& have a painful one the size of a nickel right now on the back of my shoulder) so I should keep track of that.

This may have nothing whatsoever to do with gluten. I've had two of these in the past year, and they both turned out to be MRSA (Methcillin Resistant Staph. Aureo-something) infections. This is a VERY nasty bacteria, and it's a fairly new thing that people are acquiring it outside of hospitals. When I had my first one in April, it took the docs at Kaiser 10 days to get around to testing it for MRSA and getting me on the right antibiotic, so don't assume that your doctor is up to speed on this. Not to be preachy, but I would make an appointment NOW, and demand to have the fluid cultured for MRSA. If that's what it is, they should put you on a course of Septra to get rid of it.

My sister (who's a pediatrician in Florida and diagnosed me correctly over the phone while the Kaiser docs were clueless) also advised me to do major decontamination of my house: wash all bedding/towels in bleach, throw away all open toiletries - basically sterilize everything I possibly could, because this bacteria is very hardy and extremely difficult to get rid of completely. I thought I did a good job cleaning my house, but then I got it again 6 months later. At least I knew what it was and got on the right drugs right away the second time. -sigh-

Jeanne

[MrBob]

Hi Bob,

I live in Boulder too! I'm gluten sensitive, and mostly diagnosed through alternative medicine means and gene testing through Enterolab. Sounds like you have all the information you need to know to go gluten-free. I'm not sure the purpose of trying the barley cereal. It has gluten too, so you should stay away from it.

I have attended one of the local CSA Boulder-Longmont support group meetings. It was at the Longmont United Hospital, and one of the gastroenterologists from there attended. She seemed pretty knowledgeable about celiac disease, but I don't know about gluten sensitivity. Someone from the group recommended her to me, as well as my general doc recommended her. If you PM me, I can send you her name as well as the name of a doctor another friend of mine saw and was diagnosed with celiac disease in Boulder. I haven't seen the need for me to go see one of these doctors as I've been gluten-free for so long that none of these tests would show anything anyways.

Well, you are lucky you live in Boulder because we have a lot of options here for eating gluten-free, but you still have to ask at restaurants. There are a few restaurants that have gluten-free menus. There was a good thread going on this on one of the other forums here that I found.

Here's the link for the Open Original Shared Link. Their restaurant page also has recommendations for Boulder, though it doesn't have everything. The local group is only in contact via e-mail. I can also send you that info if you PM me.

Lastly, Open Original Shared Link is a great website for information on celiac disease and gluten sensitivity. It also has all the ins and outs of diagnostic testing. You'll also find information on the links between celiac disease and Type 1 diabetes and autoimmune thyroid diseases.

Claire

Thanks for the links, Claire! I'll PM you shortly.

Regarding the barley cereal, this is me wanting to prove it to myself beyond all doubt.

This may have nothing whatsoever to do with gluten. I've had two of these in the past year, and they both turned out to be MRSA (Methcillin Resistant Staph. Aureo-something) infections. This is a VERY nasty bacteria, and it's a fairly new thing that people are acquiring it outside of hospitals.Jeanne

Whoa. Do you have any further information about this - symptoms, etc.?

[ajay]

Just one thing that I wanted to address here:

This may have nothing whatsoever to do with gluten. I've had two of these in the past year, and they both turned out to be MRSA (Methcillin Resistant Staph. Aureo-something) infections. This is a VERY nasty bacteria, and it's a fairly new thing that people are acquiring it outside of hospitals. When I had my first one in April, it took the docs at Kaiser 10 days to get around to testing it for MRSA and getting me on the right antibiotic, so don't assume that your doctor is up to speed on this. Not to be preachy, but I would make an appointment NOW, and demand to have the fluid cultured for MRSA. If that's what it is, they should put you on a course of Septra to get rid of it.

I, too, would be interested in more info. I get these nasty, deep, lesion-like pimples, but I've suspected they're correlated to my diet. They seem to appear about the same time as some of my other symptoms, and the recur in the exact same places each time. Is there anything characteristic about a MRSA infection?

[jnclelland]

I, too, would be interested in more info. I get these nasty, deep, lesion-like pimples, but I've suspected they're correlated to my diet. They seem to appear about the same time as some of my other symptoms, and the recur in the exact same places each time. Is there anything characteristic about a MRSA infection?

It's basically an abscess. Mine have started out feeling like a pimple, or possibly a spider bite. (In fact, my sister says that when a patient comes in with an alleged spider bite, she says that if they didn't actually SEE the spider, it's probably MRSA.) But then they got bigger, really hard, and very tender to the touch, and never really got any better until I got on Septra. The first one grew to probably half an inch in diameter; the second one didn't get that big because I got to the doctor faster. They would probably eventually pop and drain on their own; my sister says that your body will eventually fight it off, but it can take awhile.

If you google MRSA, you'll probably find lots more info. In any case, a trip to the doctor probably wouldn't hurt; I speak from experience when I say that it's a LOT less unpleasant to get on the right antibiotic sooner rather than later!

Jeanne

[Budew]

MRSA (Methcillin Resistant Staph. Aureo-something) infections.

Thanks for the tip. I will look into testing. I too am purging, cleaning and sterilizing everything.

[squirrelgardens]

Hey Bob. I am new too.

So very grateful to find this forum.