Complicated Case With Previous Autoimmune Dx - Could It Be Celiac? Help!

[Grash]

I've been having some pretty severe medical issues since 2004 when I was 27.

In 2004 I started to come down with bizarre symptoms the doctors couldn't figure out including flu like symptoms, fevers, swollen toes, mouth ulcers, and general achiness. I finally was sent to a rheumetologist who diagnosed me with Bechet's disease. Well about 3 months later I moved for graduate school so had to find a new rheumetologist. The new guy said he didn't think it was Bechet's disease, but instead thought it was either Reactive arthritis or psoriatic arthritis. He's settled on psoriatic arthritis (although I only get small dime size spots on my left foot of what may be psoriasis). The symptoms have been going up and down for years, sometimes better, sometimes worse, with little rhyme or reason.

In 2010 I broke a toe by accidentally stubbing it against a chair. Had blood tests done and I was super low on vitamin D and am still taking 2000 IU's a day to supplement (and I generally take a lot of vitamins - B complex, multivitamin, D supplement, fish oil, and glucosamine/condritin). It took two months for the toe to heal.

Last summer I developed a rash across my entire stomach. I've changed soaps, gone fragrance free, etc. - no help. It persists. But my doctor doesn't seem even slightly concerned about it (it's astonishing all the things that they'll just chalk up to autoimmune issues).

Last November I had walking pneumonia for almost a month - three bouts of antibiotics before I was finally better.

Then about 4 weeks ago I started to develop daily nausea. I did the pregnancy test route, which were negative. By the next week it developed into nausea, vomiting, diarrhea, stomach pain, gassiness (both burping and flatulence), indigestion/heart burn, and beige stools. My doc thought it was a stomach bug initially because my white blood cells were "slightly elevated" on the blood tests. She also send me for an ultrasound last week of my gallbladder, stomach, pancreas, and right kidney. The results were normal except for a slightly fatty liver (no gallstones, no kidney infection). She now thinks it's likely an ulcer due to NSAID use (which I've been off of for 4 weeks, bland diet, no alcohol or caffeine either). The h. pylori test she gave me came back negative too. So now she's got me on prescription strength priolesec now for 4 days without any relief.

Anyway, I continue to feel this wringing pain in my stomach daily. The initial heart burn has gone away. But I'm left with a constant achy pain in my stomach right below my breast bone that continues about half way down to my belly button. It's so bad that I can't even bear a bra or a cami with a built in bra - it makes me throw up. I'm alternating between diarrhea and constipation now. And I continue to have nausea on and off. I also continue to have copious amounts of gas and beige stools.

I'm at my wits end. I've been out of work for 2 weeks with this pain (it's painful to sit up). And I'm starting to feel depressed because nothing's making me feel better - nothing is relieving this pain and discomfort. I'm finally seeing a GI on Monday afternoon - I think they're planning to look for ulcers with an endoscope. However, I'm wondering if I should bring up possible celiac disease? From looking at the symptoms it seems that all these weird medical issues conform to celiac disease - plus my mom has always had awful digestive issues as well (had her gallbladder out, part of one of her intestines removed due to adhesions).

So what do you guys think? It wouldn't hurt to bring it up with the GI of course. But I am just wondering how forceful I should be about it. With all these medical problems I feel like the doctors sometimes think I'm just being dramatic or something - or it's just all due to my autoimmune issues. Anyway, any feeddback or help or common experiences would be much appreciated. Thanks for any help you can give me!!

[Grash]

A few more things I forgot to add:

Broken my arm 6 times in my life for unremarkable events. Had a lot of stomach aches as a child. I was diagnosed with IBS at 18 due to severe stomach cramping (but it eventually went away). I've started to get migraines in the past year. I also was never allergic to anything as a child and am now allergic to shellfish, penicillin, zythromyacin, and really bad seasonal allergies that last all year.

[Bubba's Mom]

Your symptoms could fit with celiac. Ask to be tested.

You could also possibly need digestive enzymes? If your pancreas is inflamed it will cause pain in the area you described, and may not be producing the enzymes you need to digest your food well? It's also common with Celiacs.

[Grash]

Your symptoms could fit with celiac. Ask to be tested.

You could also possibly need digestive enzymes? If your pancreas is inflamed it will cause pain in the area you described, and may not be producing the enzymes you need to digest your food well? It's also common with Celiacs.

My pancreas actually came back looking normal. Just my liver was a little wonky (but that said that the slightly fatty liver isn't all that abnormal either).

I also take two quality refrigerated probiotics a day (have done so since 2008 when I had post-surgical digestive complications after having a dermoid cyst removed with 75% of one of my ovaries). I have digestive enzymes and could start taking them to see if it makes any difference though, thanks for the suggestion.

[pricklypear1971]

Demand a full Celiac panel. Ask for a Celiac biopsy in addition to any other if they scope.

If they refuse your testing, find another doctor.

If you don't feel up to fighting with the doctors, go gluten-free on your own. But please try it.

Let me add, you must be eating gluten for accurate Celiac testing. So try to get testing first. But please don't let a doctor convince you it isn't the problem until you try gluten-free.

[Grash]

Demand a full Celiac panel. Ask for a Celiac biopsy in addition to any other if they scope.

If they refuse your testing, find another doctor.

If you don't feel up to fighting with the doctors, go gluten-free on your own. But please try it.

Let me add, you must be eating gluten for accurate Celiac testing. So try to get testing first. But please don't let a doctor convince you it isn't the problem until you try gluten-free.

Thank you, I will definitely ask for all those tests!! I appreciate you detailing it out. I've been reading so many of these posts over the last few days and have seen how people have been misdiagnosed. It's such a shame. I'm just bracing myself. And I do indeed plan to go gluten free if these doctor's don't come up with some answers that make me feel better (but am eating gluten presently, and probably mostly gluten because I'm eating bland - so bread, pasta, crackers, etc.).

[IrishHeart]

I agree.

Your symptoms sound gluten-related and yes, be sure to stay on gluten for Celiac testing to be valid.

Autoimmune diseases go hand-in-hand and only makes your case for Celiac testing all the more convincing and logical.

Bring a list of ALL your symptoms and conditions with you to the doctor. Don't be shy and don't let them wave you off without answers. This is how so many of us go UN-DXed for years and acquire MORE AI diseases.

Taking Prilosec for 4 weeks without relief --to me, that means something else fuels those digestive issues.

Best wishes. Keep us posted.

[Grash]

I agree.

Your symptoms sound gluten-related and yes, be sure to stay on gluten for Celiac testing to be valid.

Autoimmune diseases go hand-in-hand and only makes your case for Celiac testing all the more convincing and logical.

Bring a list of ALL your symptoms and conditions with you to the doctor. Don't be shy and don't let them wave you off with. This is how so many of us go UN-DXed for years and acquire MORE AI diseases.

Taking Prilosec for 4 weeks without relief --to me, that means something else fuels those digestive issues.

Best wishes. Keep us posted.

I also really appreciate your reply. Being this sick this young makes everyone think it must be "in your head" or something. So having this validation really helps

I've just found it so eye opening as I've read all the symptoms of celiac and read everyone's experiences on the boards. It's just remarkable to me that basically everything that's been wrong with me for the last few years might be explained by this (yet it hasn't been mentioned once by a doctor). It would be such a relief to get a handle on it.

Anyway, I'll keep you posted about how it goes Monday! Thanks!

[beebs]

Oh yes, you need to be forceful, ask for the tests and make sure you read up as much as you can on here. There is a high rate of false negs - so if it is neg you need to know what you are talking about. Also - undiagnosed Celiac disease can trigger other autoimmune diseases, so its possible that those other symptoms you have are another autoimmune disease entirely (I have 3). Good luck!

[IrishHeart]

Being this sick this young makes everyone think it must be "in your head" or something. So having this validation really helps

Anyway, I'll keep you posted about how it goes Monday! Thanks!

We believe you. Being this sick at any age is not "in anyone's head". How do you "make up" vomiting, diarrhea, fevers, etc??

Good luck, hon and let us know what happens!

[scratchit]

I've been having some pretty severe medical issues since 2004 when I was 27.

In 2004 I started to come down with bizarre symptoms the doctors couldn't figure out including flu like symptoms, fevers, swollen toes, mouth ulcers, and general achiness. I finally was sent to a rheumetologist who diagnosed me with Bechet's disease. Well about 3 months later I moved for graduate school so had to find a new rheumetologist. The new guy said he didn't think it was Bechet's disease, but instead thought it was either Reactive arthritis or psoriatic arthritis. He's settled on psoriatic arthritis (although I only get small dime size spots on my left foot of what may be psoriasis). The symptoms have been going up and down for years, sometimes better, sometimes worse, with little rhyme or reason.

In 2010 I broke a toe by accidentally stubbing it against a chair. Had blood tests done and I was super low on vitamin D and am still taking 2000 IU's a day to supplement (and I generally take a lot of vitamins - B complex, multivitamin, D supplement, fish oil, and glucosamine/condritin). It took two months for the toe to heal.

Last summer I developed a rash across my entire stomach. I've changed soaps, gone fragrance free, etc. - no help. It persists. But my doctor doesn't seem even slightly concerned about it (it's astonishing all the things that they'll just chalk up to autoimmune issues).

Last November I had walking pneumonia for almost a month - three bouts of antibiotics before I was finally better.

Then about 4 weeks ago I started to develop daily nausea. I did the pregnancy test route, which were negative. By the next week it developed into nausea, vomiting, diarrhea, stomach pain, gassiness (both burping and flatulence), indigestion/heart burn, and beige stools. My doc thought it was a stomach bug initially because my white blood cells were "slightly elevated" on the blood tests. She also send me for an ultrasound last week of my gallbladder, stomach, pancreas, and right kidney. The results were normal except for a slightly fatty liver (no gallstones, no kidney infection). She now thinks it's likely an ulcer due to NSAID use (which I've been off of for 4 weeks, bland diet, no alcohol or caffeine either). The h. pylori test she gave me came back negative too. So now she's got me on prescription strength priolesec now for 4 days without any relief.

Anyway, I continue to feel this wringing pain in my stomach daily. The initial heart burn has gone away. But I'm left with a constant achy pain in my stomach right below my breast bone that continues about half way down to my belly button. It's so bad that I can't even bear a bra or a cami with a built in bra - it makes me throw up. I'm alternating between diarrhea and constipation now. And I continue to have nausea on and off. I also continue to have copious amounts of gas and beige stools.

I'm at my wits end. I've been out of work for 2 weeks with this pain (it's painful to sit up). And I'm starting to feel depressed because nothing's making me feel better - nothing is relieving this pain and discomfort. I'm finally seeing a GI on Monday afternoon - I think they're planning to look for ulcers with an endoscope. However, I'm wondering if I should bring up possible celiac disease? From looking at the symptoms it seems that all these weird medical issues conform to celiac disease - plus my mom has always had awful digestive issues as well (had her gallbladder out, part of one of her intestines removed due to adhesions).

So what do you guys think? It wouldn't hurt to bring it up with the GI of course. But I am just wondering how forceful I should be about it. With all these medical problems I feel like the doctors sometimes think I'm just being dramatic or something - or it's just all due to my autoimmune issues. Anyway, any feeddback or help or common experiences would be much appreciated. Thanks for any help you can give me!!

Sorry to hear you, like so many others, are suffering. To answer your question of how forceful to be, You should be very forceful about it, in a diplomatic way of course. Definitely bring up the celiac with the GI doc Monday. Also, bring up gluten sensitivity. Many MDs dismiss celiac because testing is 1) expensive and 2) the number of people with diagnosed celiac is quite low relative to the who population. On the other hand, gluten sensitivity affects an alarmingly significant segment of the population.

Are you depending upon the profit driven (not health driven) American medical establishment (HMO, PPO, etc.)? If you are, be ready to push back and demand the proper care you deserve. If they don't respond, and if you can afford it, find an independent MD, preferably through a referral from someone you know.

Whatever it is you have, it sounds like malabsorption of nutrients is a factor as demonstrated by all the broken bones. Ask to have a full blood work up, including full metabolic panel, liver function, magnesium, calcium, vitamin D (all critical for bone and dental health), endocrine functions (thyroid - TSH, T-4, T-3, TPO antibodies. estrogen. testosterone - women have it too. cortisol, etc).

Mayo clinic has a decent summary of celiac disease Open Original Shared Link. I found this site on another Open Original Shared Link and thought you would find it helpful.

I wish you all the best and hope you quickly find the relief you are seeking. If nothing else, you will find warm, caring support in this forum. Hang in there

[mushroom]

I agree with the other posters, you definitely need celiac testing. And yes, you could have psoriatic arthritis. My psoriasis started out with little round red patches that didn't even itch, just scaled over with a silver scale and dropped off, only to reappear a few weeks later nearby. Never knew what they were until after the arthritis hit, and then the full-blown psoriasis came crashing through. My arthritis is serologically RF negative.

Have you ever had a bone desnity (DEXA) scane in view of all those broken bones and low Vitamin D. That is a telltale sign of potential osteoporosis and you need a lot of D to combate that. And as if there aren't enough blood tests you need, you also need a B12, which is often very low when there is nutrient nonabsorption.

Good luck with your appt. on Monday and let us know how it goes.

[Grash]

Well, I just got back from my endoscopy and colonoscopy. The doc found that I have chronic gastritis and 4 colon polyps which he thinks are benign.

The freaking doctor gave my fiance instructions to just "continue taking the ppi, continue with what she's been doing and see if she gets better and follow up in 2 weeks". Um, I've been doing the same thing for a month! Bland foods, no alcohol, no caffeine, no NSAIDS, no stress (haven't been able to work) - in a MONTH, and have been on the prescription strength ppi for 3 weeks already. There must be something else going on! And I'm even more ticked off that I don't think he actually biopsied the right area for celiac, just the stomach lining, and the paperwork just says that the "examination of the duodenum was normal". I'm so upset!! I'm going to call them Monday and insist they see me sooner. They haven't even talked to me about the results of my blood tests, 24 hour urine, or stool tests yet (and from what I read on here I plan to request copies of all these tests to look at them for myself).

[mushroom]

I'm sorry you didn't yet learn anything definite from your procedures. You still have to wait for the pathologist's report to see what he found. The duodenum is the area of the small intestine they biopsy for celiac so all is not lost yet - it is about as far as their scope can reach, but you can't tell with the naked eye - that's why they take samples and look at them under the microscope. Did you have the celiac blood testing, and what were the results? You defiinitely need copies of all your test results, including of all the blood work, and I agree with getting them now, not in two weeks. The biopsy results will take a few days to come through. Let us know what they say.

[beebs]

I hope they took biopsies???

[Grash]

Well the doctor said it's not celiac. I'm infected with c. difficile bacteria. I thought you'd want to know

[IrishHeart]

Since my friend constantly battles C.diff, microscopic colitis and her Celiac, I would NEVER definitively rule out celiac disease given your symptoms.

IMHO