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learning2cope

Might I Have Celiac Disease?

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Hi everyone! I'm starting to put the pieces together in my wide array of medical problems and I think it could very well lead back to one problem: Celiac Disease.

 

I'll try not to make this very long but here goes... As a baby/child I always was super constipated with HUGE poops that hurt so much coming out because they were way too big for my spincter. I have always been a chubby kid but as an adult I gained a TON of weight! My weight mostly through highs chool was between 215 and 265 lbs. I am 5' 2.5" (female). I don't recall having a lot of gastrointestinal upset as a child or teen or even young adult. I was diagnosed with "growing pains" in my childhood by my pediatritian. I always hurt, felt like I had sprains all the time! That went away as I quit growing in my teens. I always had severe anxiety in middle school and high school and even to this day. My stools were always very VERY smelly. Always. But we always thought that had to do with me being born (by c-section) a whole trimester early. I was born at 28 weeks gestation. I did not have any brain bleeds, or other issues like that but I did have necrotizing fasciatis (dead/dieing colon). That healed up and we always thought that could be the cause of my severely smelly poo. We don't think anything of it anymore. It just is.

 

In my early 20's I quit having periods (same time I started gaining a lot of weight). I'd have maybe 2 periods a year. I was diagnosed with Poly Cystic Ovary Syndrome (confirmed by multiple internal ultrasounds (through the vagina, I think mainly because of my heavy weight -large belly...) I was diagnosed with hypothyroidism and put on unithroid for it. So far it's steady and not getting slower so my dose for about 2 years has been only .75mg. Occasionally I'd get diarrhea for no apparent reason, it was pale stool (yellow) mixed with yellow diarrhea. I always thought it was from some virus. In 2006 I was fully diagnosed with a psychotic form of bipolar disorder (where I hear and see things which aren't really there, along with severe mood swings from deep depression to mania). I was put on meds for that, still gained more and more weight along the way.  I was prescribed (after lots of trial and error) on Risperdal, Lexapro and Neurontin (off label for anxiety). I have been mentally stable for a few good years or so on those medicines. I have high cholesterol, low HDL, and high triglycerides. Could be partly from genetics but I'm sure a lot of it is my eating habits. Then in 2010 I was diagnosed with diabetes (pre-diabetes) and put on metformin, i then gained MORE weight when my doc assured me I'd lose weight. I was on that for about 2 years and I went off of it because it wasn't helping my blood sugar at all. Then I went on birth control to induce monthly periods due to my lack of periods due to PCOS. About 2 months after starting on them I developed a massive blood clot that broke off and clogged my main arteries in my lungs. I was admitted to the hospital, put on warfarin and lovenox, etc. That was July 2011. So I spent a year on warfarin and went off of it at the end of April after a clean CT scan with contrast. Then about that same time ( or earlier) I started having major leg pain, it was burning pain in my thighs. Doc was "sure" it was bursitis and put me on relafen (a prescrip anti-inflammatory drug). It didn't help. But I kept taking it thinking he was right. Then November 2012 I kept complaining about the pain and he decided to send me to a neurologist for an EMG test. Confirmed it was neuropathy, not bursitis. So my GP upped the Neurontin with my psych's approval. That keeps the pain away if I take it on time multiple times per day. Oh and Oct 1, 2012 I started on Victoza (injectable diabetes med) OH and I've fought hunger HUNGER since about 2006. I mean not physical hunger but the kind where you crave food any food no matter what it is, just to get it into your belly! The Victoza mostly gets rid of that severe "hunger" which I like to call "fake hunger" or "brain hunger". I still have a few days a week that I feel overly hungry all the time though. My blood sugar is okay but my A1C went up .1. It's now 6.0. My blood sugar is regularly down into the 70's and 80's but some how my a1c went up?? 

 

Now a couple of weeks ago I noticed intestinal upset, nausea, massive bloating and it felt like the gas was moving violently aorund my intestines... I had it for a couple of days on and off. Then this week I've had that pain/intestines issue every day. So bad that I feel nauseated. Loss of appetite. Very little gas comes out even when I push to make it come out. Usually nothing does. My stools are yellowish and soft, a little loose.

 

I was just at my doc on Thursday I think a week ago. I had done some very limited research on gluten and how it can affect some people by making them gain weight and feel sick. OH and I've had an "elevated temperature" which my doctor calls it, but I call it a fever since February or March of last year. always in teh evenings. starting aroudn 4pm through like 4 or 5am. Never gets to 101F. Usually 99-100.5F. Never fails, every night. But most of the time now I don't notice it like I used to. I used to feel sick, body aches, etc. But mostly that went away.

 

Since about 2003 I've had what my second dermatologist calls Palmoplantar Pustular Psoriasis (palms of hands and soles of feet). My first derm had no idea what I had so he referred me to our major research hospital in the area. But with all the research I've done lately about celiac disease and dermatitis herpetiformis I really think that's what I've got!! I know most of the things I read say it's rare to form on teh palms and soles but nothing about me is common. LOL I've been on steroid creams/ointments, biologics, methotrexate, tazorac cream (which burned me like hell!), PUVA treatments (light treatments) none of which helps me except for the steroid ointments. But I learned the hard way that my skin doesn't like steroid ointments because I would get MASSIVE fissures in my skin in my feet which made walking not only excruciatingly painful but difficult! I quit using anything to treat my feet and hands and I rarely have deep fissures anymore. Yet my "psoriasis" is untreated and hurts like heck some days. My hands seem to be getting worse while my feet are kind of getting better a little bit in some areas.

 

So after reading all of this, do you guys think I possibly have Celiac? I believe I do. I would love your opinions. Since my GP seems not to want to help me about this issue (blew me off about celiac) do you think I should just get skin biopsies of the "psoriasis" first or should I go for the gold and get an intestional biopsy and bloodwork? Should I see my dermatologist about this first or a gastroenterologist? I'm confused as to where to start. My GP is an a$$ so I'd really rather just start anywhere but there. My insurance doesn't require I have a referral. I can see anyone I want (that takes my insurance) without haveng to go through my GP.

 

Thanks, I look forward to hearing your replies. :)

 

Oh and if it helps, my weight is now steady between 370 LB and 378 LB.

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I feel for you.  Whatever you have, I hope you will be on the mend soon.  Being fairly new at this, I think everyone has celiac.  It is a good problem to have, because it can be solved.  Someone will explain about which tests.  I would think the dermatologist might be able to diagnose if you have DH.  If you do that would mean you have celiac. 

 

You need someone to help you.  I currently am having a Functional Medicine doctor help me.  They provide suppliments and herbs that can do dramatic things.

 

Diana

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Hi,  welcome to the forum! :)

 

You certainly could have celiac disease.  The first testing is usually the blood antibodie tests, usually called a celiac panel.  Then an endoscopy if the antibodies are positive.  However, if you have DH, they can take  skin biopsy to check for IgA antibodies in the skin.  Even if you don't pass any celiac disease tests, you may still have non-celiac wheat sensitivity, and need to avoid wheat for that reason.  They don't have standard tests s for that yet.  But you can eliminate gluten from your diet for 3 to 6 months and see if it improves things.

 

Non-celiac wheat sensitivity article
https://www.celiac.com/articles/23033/1/Non-Celiac-Wheat-Sensitivity-It-Exists/Page1.html

 

A discussion of the affects of gluten on personality:

 

Short temper thread
https://www.celiac.com/gluten-free/topic/34917-anger-quick-temper-depression/

 

Also, if you read up on gluten ataxia, it a disorder associated with gluten that attacks the brain itself.

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Thank you both for your replies. I know my post was quite long and I appreciate you taking the time to read it. So do I need to go to my GP for the blood antibody test? Or should I simply go to my dermatologist and get a skin biopsy first? I'm trying to avoid going to my GP. He has a god complex and thinks he's always right. He told me I couldn't have celiac because I wasn't losing weight for no apparent reason. He's not up to date on celiac disease apparently.

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http://www.cureceliacdisease.org/archives/faq/can-a-skin-biopsy-for-dermatitis-herpetiformis-dh-confirm-celiac-disease-or-is-an-endoscopy-still-needed

Can a skin biopsy for dermatitis herpetiformis (DH) confirm celiac disease or is an endoscopy still needed?

A skin biopsy should be done on a non-affected portion of the skin near the rash when there is an outbreak. It’s not necessary to perform an intestinal biopsy to establish the diagnosis of celiac disease in a patient with DH; the skin biopsy is definitive

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