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Celiac Disease
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Daunting
Regular Member
Joined : Jan 2011
Posts : 101
Posted 3/8/2011 8:53 AM (GMT -8)
Hi.

I'm new to this forum and have posted a few times on the crohn's forum. For the past 10 months I have been told I have crohn's and just found out that I might have celiac instead. First doctor in June 2010 said crohn's second doctor in September said unsure sent me to another in December, third doctor did numerous tests and endoscopy/colonosocpy. Said no signs of crohn's on the colonsocopy and that my blood tests came back semi positive for celiac, we are waiting for the results of the biopsies.

I have had some weird symptoms. tiredness, irritability, diarhea, gurgling, abdominal pains, weak nails, headaches and weekness after eating, slight hair loss and some joint paints. Diarhea tends to come and go, inflammatory medication prescribed for crohn's has helped but never completely put me in remission.

I am curious to know if anyone has had these symptoms and has either had a hard time being diagnosed between crohns and celiac.

Thank you.

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buffymoon
New Member
Joined : Jun 2010
Posts : 14
Posted 3/13/2011 8:12 AM (GMT -8)
Hi, and welcome! I have Celiac, diagnosed on biopsy 10 years ago. The symptoms vary widely from person to person. My symptoms were mostly vague, the biggest one was chronic anemia, my bone density was less than optimal even tho I have done plenty of weight bearing exercise all my life, intake plenty of calcium rich foods, get some sun exposure when I can(safely). I always had a fast gut. and pretty gassy for a chick,LOL. there are specific forums for celiac if you Google them. This board is not very active or receptive for people with celiac. I mostly come on to get insight from the Crohn's portion, as they are very active, warm and welcoming. My 29yo daughter was diagnosed with CRohns last year; I question that still, but her GI doc is adamant that she has fistulating Crohn's, and she trusts him and follows his recommendations. she is taking Remicade every 6-7 weeks. Celiac is diagnosed by small intestine biopsy and blood work, do not change your diet until they have given you a diagnosis. then you will move to a gluten free diet. Which is easier to follow these days; lots more GF items on the market and easier to identify. I wish you luck and hope you get a definite diagnosis soon, so you can move on. all your symptoms could def be related to celiac; which in my opinion, is the stupidest disease, but if I had to choose a disease..... I would choose this one.....LOL!
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Deb25
Regular Member
Joined : Apr 2009
Posts : 319
Posted 3/18/2011 5:57 PM (GMT -8)
Hi Daunting....If you haven't tried gluten free yet, and you want a definite diagnosis, then absolutely have an endoscopy first.  Just be aware, gluten intolerance is every bit as bad as celiac, and as of yet, they have no definite way to diagnose gluten intolerance, other than giving up gluten and seeing how you feel.

My father and sister are both diagnosed celiac's.  I didn't have the money 11 yrs ago to be tested and no med insurance.  My sister told me to go gluten free and see how I feel...she had been gluten free for 4 months then.  I went gluten free in July 2000 and never went back.  My neurologist ran a celiac panel on me including gene testing 2 years ago...it came back that I have double DQ1 genes, which is a double dose of gluten intolerance. 

Many crohns sufferers do better when they go gluten free.  Often times, they find out they did not have crohns to begin with.  A friends daughter was advised by a dietician to go gluten free to aid in healing from her crohns disease.

Our bodies were never intended for digesting gluten.  New studies are showing that 1 in 20 people are gluten sensitive...that's a lot.  I have 5 kids, each one has a DQ1 gene, since that was all I had to give them.  None of them are gluten free for now, even though I know they should be.  They are all grow and it's up to them to make that decision.

The point is, if you have an endoscopy and are told you do not have celiac, go gluten free anyways and see how you feel.

 

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buffymoon
New Member
Joined : Jun 2010
Posts : 14
Posted 3/19/2011 4:01 AM (GMT -8)
I agree with Deb25! seems the "intolerant" have worse symptoms than myself or my sister; who was finally diagnosed last year for osteoporosis that was resistant to every therapy tried.( I told her so...:) )
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Deb25
Regular Member
Joined : Apr 2009
Posts : 319
Posted 3/19/2011 4:21 AM (GMT -8)
It's true Buffymoon.  My dad and sister can eat all of the gluten free processed foods out there...I can't touch them.  Gluten free in the US does not mean true gluten free.  Most is actually "gluten lite" and that's how they should be labeled.  Here in the US, they feel that celiac's can tolerate up to 20ppm of gluten, even 5ppm makes me sick, and sick for weeks.

For celiac, the issue is more in the gliadin in the wheat, barley, and rye...some gluten intolerants can't have any gluten.  All grains have some form of gluten, they have known that all along.  Dr Peter Osborne has worked extensively with gluten intolerant people, he himself being gluten intolerant.  He isn't able to eat any grains either.  It has also been said, "If it looks like grain, and is used like grain, it is grain, stay away from it." 

Once my intolerance to gluten was found, then the other intolerances fell into place, a little at a time.  This last year has been the first time in over 10 years of being gluten free, that I can actually say I am feeling better.  When I go on vacation to visit family, I take my own pan for cooking my chicken, I have to take my own almond milk (I can't tolerate the processed almond milks), etc.  Yes, using another's pan that may of had some spice or seasoned salt used, will make me ill.  It's a fact that bothered my family for some time, but now understand this is how I must be for my health.

I truly feel my sister, a celiac and dietician, had a difficult time believing me.  My mom told me I was just being to careful, that I had to start eating the other foods and get my body used to them, then I would be fine.

Part of my issue, as I may have mentioned is leaky gut.  My body's immune system sees many foods as the enemy and caused leaky gut syndrome.  The candida diet has helped me so much, yet introducing new foods can be very tricky.  For a time, I was able to eat winter squash, sweet potatoes, and pumpkin...then out of the blue sweet potatoes caused a reaction, then squash, then pumpkin, I no longer can eat any of them.

I truly believe when a doctor tells a person they are not celiac, they should tell them to go gluten free any ways and see what happens.  The US is so far behind other countries in our knowledge of gluten...it's in it's infancy here.  Dr. Peter Green stated (he didn't believe in gluten intolerance for a very long time) recently...gluten intolerance in this country is now where celiac was 30 yrs ago, there is so much to be learned!"

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