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Did I Finally Find An Answer?
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9 posts in this topic

Would like some advice regarding my symptoms. As a reference so you know how long this has been going on I'll tell you I am 25 years old now. To me it sounds like Celiac Disease is the answer I've been looking for.

This is probably going to be long, so please bear with me.

Since about age 10 I've had what looks like a rash with bumps on my arms and legs. It itches too. Have tried numerous things to get it to go away with no luck.

At about 13-14 I started have digestion problems. Sometimes when I ate I would get horrible diarrhea, abdominal cramping, gas, bloating, urgency, the works. This has continued to this day.

At 15, after years of chronic strep throat infections, I had my tonsils taken out. This has curbed the infections.

Starting at about 17-18 I was gained wieght fast in spite of having little appetite. Around that time I also started getting bad heartburn and needed prescription meds for it. Had severe depression to the point of suicidal thoughts.

Sometime around 20 I was diagnosed with IBS. This GI doc was not very good, took one look at my chart, saw the history of depression and came up with this diagnosis. About a week after that I was hospitalized with gallbladder attacks and almost had to have it removed.

Around the same time as the gallbladder issues, I started having what sounded like symptoms of fibromyalgia with the painful spots upon touching.

Currently, I have all the symptoms I've listed plus over time I've developed fatigue, my hair falls out, very minor scratches don't heal. I currently have ones that are about 3 months old and are still visible. My skin is very dry also. I'm sure I'm forgetting other things too. Even though I have no appetite, and eat very little, I gain weight. I've even been on Weight Watchers in the past and exercised with no results.

Also, my mother has many of the same symptoms I do. Some of them are even worse. I also have a cousin on my mom's side of the family that has digestive issues as well and has been tested for autoimmune disorders, but I don't know what the outcomes of those were.

What do you guys think, have I finally found what has made me miserable for so many years? Thanks so much for your time.

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For what it's worth, I think it sounds like you could well have celiac. It would be worth it to get tested. Sorry to hear you are having so many health problems, and such an unhelpful doctor...

Pauliina

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Would like some advice regarding my symptoms.  As a reference so you know how long this has been going on I'll tell you I am 25 years old now.  To me it sounds like Celiac Disease is the answer I've been looking for.

This is probably going to be long, so please bear with me.

Since about age 10 I've had what looks like a rash with bumps on my arms and legs.  It itches too.  Have tried numerous things to get it to go away with no luck.

At about 13-14 I started have digestion problems.  Sometimes when I ate I would get horrible diarrhea, abdominal cramping, gas, bloating, urgency, the works.  This has continued to this day. 

At 15, after years of chronic strep throat infections, I had my tonsils taken out.  This has curbed the infections.

Starting at about 17-18 I was gained wieght fast in spite of having little appetite.  Around that time I also started getting bad heartburn and needed prescription meds for it.  Had severe depression to the point of suicidal thoughts.

Sometime around 20 I was diagnosed with IBS.  This GI doc was not very good, took one look at my chart, saw the history of depression and came up with this diagnosis.  About a week after that I was hospitalized with gallbladder attacks and almost had to have it removed. 

Around the same time as the gallbladder issues, I started having what sounded like symptoms of fibromyalgia with the painful spots upon touching. 

Currently, I have all the symptoms I've listed plus over time I've developed fatigue, my hair falls out, very minor scratches don't heal.  I currently have ones that are about 3 months old and are still visible.  My skin is very dry also.  I'm sure I'm forgetting other things too.  Even though I have no appetite, and eat very little, I gain weight.  I've even been on Weight Watchers in the past and exercised with no results. 

Also, my mother has many of the same symptoms I do.  Some of them are even worse.  I also have a cousin on my mom's side of the family that has digestive issues as well and has been tested for autoimmune disorders, but I don't know what the outcomes of those were.

What do you guys think, have I finally found what has made me miserable for so many years?  Thanks so much for your time.

<{POST_SNAPBACK}>

If you and your Mom aren't celiac I'll eat my hat.  You sound just like me before diagnosis.

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Got the quote last try let me try again, You do sound celiac. Both you and your Mom, don't waste any more time wondering and get it checked out either with a new doctor or by eliminating gluten from your diet. Good luck

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Celiacs certainly sounds possible to me. Definitely worth checking into.

I'd also get your thyroid checked. Hypothyroidism could account for some of the things you describe too.

Good luck!

Susan

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It could well be celiac. I would encourage you to:

1. get the skin rashes biopsied for DH

2. get a doctor to run the full celiac panel of blood work on you

3. regardless of the results, after all testing is complete, try the gluten-free diet (strictly) for three months

You have nothing to lose by being tested, and potentially, quite a bit to gain.

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I agree that there is a very strong liklihood that you could be celiac, but I do think you definitely need to get your thyroid checked also. Hypothyroidism could cause some of those symptoms as well (also, hypothryoidism is linked to celiac so there is a very good possibility it is a combination of the two that you have - like me!! :P )

If getting tested by a doctor is problematic, I would highly recommend Enterolab. I have heard many good things about their testing and results from posters here.

Either way, you definitely need to get tested to find out one way or another....

Welcome to the board!!! ;)

Karen

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What do you guys think, have I finally found what has made me miserable for so many years?  Thanks so much for your time.

<{POST_SNAPBACK}>

Hate to tell you but I think you came to the right place. Do an internet search for Dermatitis Herpetiformis - a skin disorder that is the sole property of celiacs. That is what you seem to be describing. Good luck namesake.

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Your symptoms very well could be celiac disease. Have you been to other websites looking for info? A good one I found in very simple to understand terms is:

http://digestive.niddk.nih.gov

I would find a printout of all the symptoms of celiac disease, highlight all that you have and take it to a dr. Or try the gluten-free diet. That's how I was dx with celiac disease. And the diet challenge is a valid dx tool. Hope you get better soon!

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  • Topics

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    • Did your doctor check for SIBO, H. pylori, ulcers, etc. when he was obtaining biopsies to check for celiac disease?  
    • Oh, and as I mentioned in my own post on pain, xanax. I swear. I tried it just to deal with the occasional panic I had at weird scary symptoms and clueless doctors. I am not a fan of long term use. But I recently found that .25 mg seems to aid with the neuropathic pain. It does not go away, but it helps. 
    • It does sound like a Glutening and you are just a few months into the diet.  It might help if you read our Newbie 101 thread under the "Coping" section.   Here is some information about rice milk: https://www.verywell.com/is-rice-dream-gluten-free-562354 Many, many celiacs are often lactose intolerant temorarily or permanently if you are naturally genetically inclined.  When I am glutened, I lose the ability to digest lactose for a while.   Salad?  Great but it can be rough on a sore gut!  Think soups, stews, easy-to-digest foods that you prepare yourself until you feel better.  Did your folks give you salad after a bout of flu?  Or did you stick with jello and broth?  I am intolerant still after three years to garlic and onions (the lactose resolved, thankfully).  You have a leaky gut (Google zonulin and Dr. Fasano who is a leading celiac researcher to verify that this is true) and that means you can become intolerant to anything (hopefully, just temporarily).   If you are 100% sure that you have had no access to gluten....did you eat out lately?.....then see your doctor.  Remember, celiac disease symptoms can change.  And here is the biggie.....it can take weeks, months or years to heal from celiac disease.  Two months in is nothing, really.  Why?  It takes time to figure out the diet and time for antibodies to come down.  celiac disease is an autoimmune disorder triggerEd by gluten.  once triggered it can go on and on damaging your gut especially with repeated glutenings (accidental or through cross contamination). I hope you feel better soon!  
    • I concur! I literally feel your pain as well. Like, at the moment, lol. Did you have an endo to see inflammation or damage? I am close to begging my GI for carafate or something to coat and protect. How about testing your antibodies to see if they are still rising? I read somewhere here rice milk may not be a good option.  Folks here have also suggested to me to stick with whole foods. Limit processed. Especially stuff that is not certified gluten-free, like chex. I think small amounts of gluten are in processed foids and can add up. I too reacted to lettuce the other day like I was ingesting glass. My sibling  had a food sensitivity panel done and it came back positive for a few things he had been eating a lot of. He can now eat them, but had to cut them out of his diet. Lettuce is probably on mine.  I have been drinking carrot and pomegranate juice,  dandelion root tea with hiney, aloe water, lots of squash, fish. Mild, no garlic, no onions or hot sauce. No coffee. It sucks.  Inflammation can tick off other organs, you mention a "Pain below". Not exactly sure which side, but certainly call your doc Monday. Sooner if the pain increases.
    • You should see a GI specialist before you go gluten free.  They should do a upper endoscopy to check for celiac damage.  Colonoscopy won't show anything related to celiac.  Also no you should not feel worse on gluten free, you should feel better.
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