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Sick? Celiac Disease Maybe?

queeniemikki

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queeniemikki Newbie
queeniemikki
Posted

For the last few months i've been getting really bloated. I'm constipated almost all of the time (and laxatives don't help). I've had random headaches for as long as i remember. Doctors at first thought it was my eyes but eventually just decided there was nothing wrong with me and i must have seasonal allergies (which all the tests came back negative for). Since June i've lost almost 20 pounds unintentionally (used to be 125 now 108) but it doesn't look like I lost any weight because for all the weight I lost from my stomach has been replaced by bloat. But ive never really had bad diarriah which seems like what most people with celiac disease seem to have. I'm also really short compared to the rest of my family (mom 5' 6" dad 5' 11" twin brother 5' 8" and me 5'3". I have super sensitive bones (I've broken 6 bones in 4 years). Lately whenever i stand up o sort of get a head rush and can't see right for a few seconds because these black dots swarm all over my vision. I've always had really thin hair and now I'm just remembering that when i was little i would get rashes that my doctors decided was eczema but now I'm thinking it might have been DH. I've also had reflux since i was 13.

For 4 days last week i stopped eating gluten without telling anyone (I'm 15) and i didn't notice any MAJOR improvements but on friday i started eating it again and since then i've been really bloated and constipated.

Tips on how i should ask my parents to have me tested? It can't have come from my mom's side because she has Chron's disease and before she was diagnosed they tested her for celiac and she was negative. That means she couldn't have given it to me, right? But i want to be tested because mostly all of the symptoms for celiac disease sound like mine.

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Seeking
Posted

I'm new here, but I would just tell your mom what you told us. Say you have been researching it and you want to be tested. You can have it done with a simple blood test maybe at your physical. I can't imagine why she might object. IF she does you can take yourself of gluten and research as you already have done.

  • 2 weeks later...
Booghead Contributor
Booghead
Posted
:ph34r: Well I'm 5'0 and thats normal for my family B) I did lots of research and I was sure I had Crohns, I went to the doctor and they tested me for Celiacs which came back positive. So self-diagnosing doesn't always work. I didn't have much diarrhea either except once when I got really sick. Mostly it has been Constipation for me. Much better off of gluten, also Milk would really make me sick and bloat. Ask her for a blood test but if she says no ( I know how parents can be) then go off gluten and dairy, just try it. Be very careful not to eat any gluten in order to get results, and perhaps if you feel better after 3-4 weeks eat some gluten and see what happens. I'm new to this too. I'm 17, message me if you want to talk.
pricklypear1971 Community Regular
pricklypear1971
Posted

For the last few months i've been getting really bloated. I'm constipated almost all of the time (and laxatives don't help). I've had random headaches for as long as i remember. Doctors at first thought it was my eyes but eventually just decided there was nothing wrong with me and i must have seasonal allergies (which all the tests came back negative for). Since June i've lost almost 20 pounds unintentionally (used to be 125 now 108) but it doesn't look like I lost any weight because for all the weight I lost from my stomach has been replaced by bloat. But ive never really had bad diarriah which seems like what most people with celiac disease seem to have. I'm also really short compared to the rest of my family (mom 5' 6" dad 5' 11" twin brother 5' 8" and me 5'3". I have super sensitive bones (I've broken 6 bones in 4 years). Lately whenever i stand up o sort of get a head rush and can't see right for a few seconds because these black dots swarm all over my vision. I've always had really thin hair and now I'm just remembering that when i was little i would get rashes that my doctors decided was eczema but now I'm thinking it might have been DH. I've also had reflux since i was 13.

For 4 days last week i stopped eating gluten without telling anyone (I'm 15) and i didn't notice any MAJOR improvements but on friday i started eating it again and since then i've been really bloated and constipated.

Tips on how i should ask my parents to have me tested? It can't have come from my mom's side because she has Chron's disease and before she was diagnosed they tested her for celiac and she was negative. That means she couldn't have given it to me, right? But i want to be tested because mostly all of the symptoms for celiac disease sound like mine.

There's a 20% chance a Crohn's patient will be Celiac.

Both are autoimmune diseases. Both are genetic (Celiac has clearer markers than Crohn's).

You are at HIGHER risk with a dx'ed autoimmune disease in your parent.

Celiac can trigger at any time, and just because she had a negative test then doesn't mean she's negative now.

Btw gluten is inflammatory, and many Crohn's patients benefit from eliminating it (I believe even if they aren't Celiac).

Now, mom may not appreciate these facts....

Booghead Contributor
Booghead
Posted

There's a 20% chance a Crohn's patient will be Celiac.

Both are autoimmune diseases. Both are genetic (Celiac has clearer markers than Crohn's).

You are at HIGHER risk with a dx'ed autoimmune disease in your parent.

Celiac can trigger at any time, and just because she had a negative test then doesn't mean she's negative now.

Btw gluten is inflammatory, and many Crohn's patients benefit from eliminating it (I believe even if they aren't Celiac).

Now, mom may not appreciate these facts....

Well I didn't know those things. I do fell much better off of gluten but what your saying is that could still be from Crohns? I had a negative EGD Biopsy for Celiacs. I also had a Colonoscopy that looked normal. I wonder if I might have Crohns still? Or perhaps both?

pricklypear1971 Community Regular
pricklypear1971
Posted

Well I didn't know those things. I do fell much better off of gluten but what your saying is that could still be from Crohns? I had a negative EGD Biopsy for Celiacs. I also had a Colonoscopy that looked normal. I wonder if I might have Crohns still? Or perhaps both?

All I know is that 20% of Crohn's patients are Celiac... My cousin has Crohn's so I looked into it to that degree.

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    • trents
      Sainsbury's Free From White Sliced Bread - Now Egg Free - Completely Ruined It

      By trents · Posted

      This is a common experience across the board with various brands of gluten-free bread products. Prices go up, size goes down. Removal of the egg component may be for the purpose of cost-cutting related to bird flu supply shortages or it may be catering to those with egg allergy/sensitivity, fairly common in the celiac community.
    • HAUS
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      Living with Coeliac Disease since birth, Bread has always been an issue, never too nice, small slices and always overpriced, But Sainsbury's Free From White Sliced Bread seemed to me to be an exception with it's large uniform 12 x 12cm slices that had the bounce, texture and taste of white bread even after toasting with no issue that it was also Milk Free. Unfortunately Sainsbury's have changed the recipe and have made it 'Egg Free' too and it has lost everything that made the original loaf so unique. Now the loaf is unevenly risen with 8 x 8cm slices at best, having lost it's bounce with the texture dense and cake like after toasting resembling nothing like White Bread anymore. Unsure as to why they have had to make it 'Egg Free' as the price is the same at £1.90 a loaf. Anyone else experiencing the same issue with it? - also any recommendations for White Bread that isn't prescription? / Tesco's / Asda's are ok but Sainsbury's was superior.
    • Mari
      My only proof

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      Years  ago a friend and I drove north into Canada hoping to find a ski resort open in late spring,We were in my VW and found a small ski area near a small town and started up this gravelled road up a mountain. We  got about halfway up and got stuck in the mud. We tried everything we could think of but an hour later we were still stuck. Finally a pickup came down the road, laughed at our situation, then pulled the VW free of the mud. We followed him back to the ski area where where he started up the rope ski lift and we had an enjoyable hour of skiing and gave us a shot of aquavit  before we left.It was a great rescue.  In some ways this reminds me of your situation. You are waiting for a rescue and you have chosen medical practitioners to do it now or as soon as possible. As you have found out the med. experts have not learned how to help you. You face years of continuing to feel horrible, frustrated searching for your rescuer to save you. You can break away from from this pattern of thinking and you have begun breaking  away by using some herbs and supplements from doTerra. Now you can start trying some of the suggestions thatother Celiacs have written to your original posts.  You live with other people who eat gluten foods. Cross contamination is very possible. Are you sure that their food is completely separate from their food. It  is not only the gluten grains you need to avoid (wheat, barley, rye) but possibly oats, cows milk also. Whenever you fall back into that angry and frustrated way of thinking get up and walk around for a whild. You will learn ways to break that way of thinking about your problems.  Best wishes for your future. May you enjpy a better life.  
    • marion wheaton
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      Thanks for responding. I researched further and Lindt Lindor chocolate balls do contain barely malt powder which contains gluten. I was surprised at all of the conflicting information I found when I checked online.
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