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Hi From A New Gluten Free (possibly Celiac) Gal!


syren4444

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syren4444 Rookie

Hi all,

So glad to have found these boards, I'm sure it will be a huge help to me in the coming time as I learn more about keeping to a celiac diet.

My story as abbreviated as I can make it:

'04 Weird persistant rash that took forever to go away, head to toe.

'05 -stopped eating wheat for weight control reasons (on super strict limited diet), still ate oats, barley and other guten sources

'06-'08 - developed mild symptoms of Ulcerative Colitis. spent about two years never getting a straight diagnosis because my symptoms didn't match up to any standards, did colonoscopy '06, was put on every drug imaginable, none worked.

'08- I hear about Celiac and wonder if that is my issue, see a new Gastro (recommended by celiac association), and he thinks i have IBS and puts me on a two week dose of a drug to kill bug possibly causing my issues. He does celiac blood test and warns me it will come back negative no matter what since I've been sans gluten for 3+ years. He says he needs to do it to authorize the further celiac testing.

12/08 - still severe, gassy stomach cramps and issues, so make drastic diet overhaul, eating more variety, healthy fats, nuts etc, but also more gluten (ezekiel bread, oats). Stop BCP's. The new diet or possibly the IBS drug works, no more blood symptoms, less stomach issues, celiac test negative as expected, but we don't test further due to assuming celiac isn't an issue.

5/09 Diagnosed with PCOS, no menstrual cycles, weight gain, bloating, tired, etc. My new amazing GYN doc thinks there is a chance I'm celiac and causing some things she sees in my blood reports.

5/09 - Did LABCORP gene test. Positive for DQ2. Find our my Aunt might have been diagnosed Celiac years ago.

Over the years I


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mamaw Community Regular

Hello & welcome

Bone Loss & blaoting, gassy, all can be from celiac or gluten intolerance... not all genes have been ID as yet .

Remember that products should state no gluten. Being wheat free does not make a product gluten free. ALways look for gluten-free!!!!!!

Some never experience anything when they get gluten, others react differently. Our bodies are very unique so what bothers one may not be a bother to another...

Labcorp did my celiac blood panel & my DNA testing....

lizajane Rookie

you may be surprised at how many symptoms you DO have that you just didn't realize were related to gluten. i have been gluten free for 2.5 months. i didn't ever realize that i had more gas than normal people until i stopped eating gluten and then was glutened by accident. i also started getting a weird version of heartburn when i get glutened- terrible pressure and feeling like i need to burp. (that sounds so gross to me! ha!) it kept me up for TWO hours in the middle of the night one night after trusting someone who said a meal was gluten free. my fatigue was devastating for 4 years and was immediately improved upon going gluten free. but again, being glutened by accident makes me sleepy and loopy and kinda stupid!

and yes, from what you said, i think you really are gluten intolerant if not celiac.

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    • Samanthaeileen1
      thank you RMJ! That is very helpful advice. Good to know we aren’t crazy if we don’t do the endoscopy. We are going to try the gluten free and see how symptoms and levels improve.    thank you Wheatwacked (love the username lol) that is also reassuring. Thankfully she has an amazing and experienced pediatrician. And yesss I forgot to mention the poop! She has the weirdest poop issues.    How long did it take y'all to start seeing improvement in symptoms? 
    • Wheatwacked
      My son was diagnosed when he was weaned in 1976 after several endoscopies.  Given your two year old's symptoms and your family history and your pediatrition advocating for the dx, I would agree.  Whether an endoscopy is positive or negative is irrelevant.   That may happen even with endoscopy.  Pick your doctors with that in mind. In the end you save the potential trauma of the endoscopy for your baby.   Mine also had really nasty poop.  His doctor started him on Nutramigen Infant because at the time it was the only product that was hypo allergenic and had complete nutrition. The improvement was immediate.
    • RMJ
      So her tissue transglutaminase antibody is almost 4x the upper end of the normal range - likely a real result. The other things you can do besides an endoscopy would be: 1.  Genetic testing.  Unfortunately a large proportion of the population has genes permissive for celiac disease, but only a small proportion of those with the genes have it. With family history it is likely she has the genes. 2.  Try a gluten free diet and see if the symptoms go away AND the antibody levels return to normal. (This is what I would do). Endoscopies aren’t always accurate in patients as young as your daughter. Unfortunately, without an endoscopy, some doctor later in her life may question whether she really has celiac disease or not, and you’ll need to be a fierce mama bear to defend the diagnosis! Be sure you have a good written record of her current pediatrician’s diagnosis. Doing a gluten challenge for an endoscopy later in life could cause a very uncomfortable level of symptoms.   Having yourself, your husband and your son tested would be a great idea.  
    • Samanthaeileen1
      here are the lab ranges.  Normal ranges for tissue transglutaminase are: <15.0 Antibody not detected > or = 15.0 Antibody detected normal for endomysial antibody is < 1.5. So she is barely positive but still positive. 
    • JoJo0611
      I have been diagnosed with coeliacs disease today after endoscopy, bloods and CT scan. I have also been diagnosed with Mesenteric Panniculitis today. Both of which I believe are autoimmune diseases. I have been told I will need a dexa scan and a repeat CT scan in 6 months. I had not even heard of Mesenteric Panniculitis till today. I don’t know much about it? Has anyone else got both of these. 
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