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This Site May Change My Life!

Jmza

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Jmza Newbie
Jmza
Posted

I am no doctor.. but I have definitely seen my fair share of them since I was a little girl. I was diagnosed with IBS a few years ago and told to "eat more fiber". That has never sat well with me, especially considering I eat plenty of fiber (in fact, it makes things worse for my constipation), I've tried probiotics and those intestinal muscle relaxers.. none of which have worked. I've also tried logging food, looking for combinations or patterns.. NOTHING. Well.. I never thought about gluten!

I just made an appointment with a new GI doctor I found listed on this site, hoping he will be willing to run the tests I need to rule this out or confirm celiac disease is my ailment. Here's a bit of my track record:

As a little girl, I had very bad constipation, to the point where it would hurt so bad to go, that I refused to try. Doctors recommended intestinal mineral oil and that seemed to help.

A little later, still a young girl, I developed a "fungus-like" or "eczema-like" rash on my hands, which migrated to my feet. I continued to have this rash on my feet for years. Doctors were puzzled and gave me cortisone cream for the itch. I itched until I was raw =(. Eventually, it just sort of got better? No real reason for its departure.. but I occasionally have a dime sized recurrance on my feet, that goes away pretty quickly. After reading this forums, I looked up DH and I am blown away! It's identical!!

I suffer, almost daily, with horrible bloat. Once I feel bloat, I can't eat anything until it goes away, or else it gets worse. It literally feels like I'm expanding my insides to their max.. and most days I have to leave work because of the pain. I also don't go to the bathroom regularly at all. I went a week and a half constipated and then spent a day in the bathroom, with D.

My periods have never been regular, ever since I can remember. I cannot actually predict when it will come.

I suffer with bad headaches, and have had my brain scanned because of the frequency. The end result was the doctor telling me to "drink more water". I drink A LOT of water.

I've never been allowed to donate blood, even though I try every time, due to low iron. When I get tested for anemia, the doctors say I am borderline. It never gets better, no matter how much iron I attempt to take in.

On the flip side, I am not thin and don't "look" unhealthy. But I have been getting sick constantly for most of my life. I always have canker sores in my mouth, had unexplained bloody UTI's as a child, and even contracted shingles at 16. The doctors feared lupus or HIV, but all tests came back negative. Soooo I've sort of been hanging out thinking this is just what life is supposed to be like... Until I found this site the other day. I read an artcle about someone with gluten intolerance. I had never really heard of it, and certainly not heard of Celiac. I was thinking it would be a great idea to atleast rule gluten out, but then I saw the pics of DH and I'm convinced! I have an appoint on the 17th with the GI.. I wish I didn't have to continue a gluten diet until after tests.. I am very anxious to see if my symptoms go away. I can't even imagine what that's like!

Thanks to all for posting on here. Hopefully I get some answers soon, but this is the closest thing I've found yet.

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squirmingitch Veteran
squirmingitch
Posted

Your symptoms certainly fit celiac symptoms.

It is a falsehood that all celiacs are rail thin & look unhealthy. Some of us are rail thin & look healthy. Some of us are downright fat & either look healthy or look unhealthy. Some are just overweight. We've had discussions about this before --- with the reasoning being proffered that malabsorbtion can as easily make you skinny as it can result in making fat cells rather than the food being utilized as it should be. There are lots & lots of celiacs on here who were told by doctors they couldn't possibly have celiac disease b/c they were too fat to be celiac. Shame on those doctors!mad.gif

As badly as you want to get going on the gluten-free diet; just hang in there & keep eating it until ALL testing is done.

It's wonderful that you found a doc listed from this site! Since you have dh then you stand more of a chance of the blood returning a false neg. than if you didn't have dh. Just be aware of that.

Welcome to the board!

nvsmom Community Regular
nvsmom
Posted

Your symptoms arevery much like mine: C and stomachaches since a small girl, bloat to the point where it hurts quite a bit and you get that lovely pregnant look, fatigue, aches and pains, migraines half the time, irregular periods... Celiac dx and going gluten-free definitely helped me with most of it but I had my TSH tested, because celiacs frequently have hypothyroidism, and I have an underactive thyroid; probably Hashimoto's. That seems to be the cause of my C, irregular and heavy periods, some of the migraines, and aches and pains.... You might want to get your thyroid checked too.

Hope you feel well soon once you are on the gluten-free diet. Good luck!

shadowicewolf Proficient
shadowicewolf
Posted

This site helps me a lot as well.

Get tested, stay on gluten until all the testing has been done, then regardless of results try gluten free afterwards.

kittty Contributor
kittty
Posted

I suffer with bad headaches, and have had my brain scanned because of the frequency. The end result was the doctor telling me to "drink more water". I drink A LOT of water.

My doctor said that eating more protein would cure my headaches. lol. I wonder sometimes if they pick their answers out of a hat.

shadowicewolf Proficient
shadowicewolf
Posted

Protien does help with headaches some. But it does not make them go away.

GottaSki Mentor
GottaSki
Posted

Welcome!

Squirmy is spot on - we come in all shapes and sizes - unfortunately many in the medical community were taught that Celiac Disease is a childhood disease that must include being underweight or short in stature - looking healthy can be the most frustrating thing in the doctor's office - especially when you have years of "normal" blood tests. The only abnormal blood test I had for nearly three decades was low iron. Glad you found the tests you need on your own - it took far too long for me.

Make sure they run the full celiac blood panel and check for other nutrient deficiencies: Bs, D, K, Calcium, Magnesium, Copper and Zinc - nutritional deficiency is another strong indicator of celiac.

Good luck to you :)

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1desperateladysaved Proficient
1desperateladysaved
Posted

I hope you will get your tests soons and will get off to a non gluten trial diet. I hope this will change your life.

Diana *** -here are some flowers for you ***

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