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Tina81980

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Tina81980 Rookie
Tina81980
Posted

Hello..My name is Tina & I am new here. I came to find out about Celiac through reading a book about autism. I have a little boy with Aspergers Syndrome. After doing some research I came to believe that I may have some symptoms of celiac or at least an intolerence. After the birth of our 2nd child I started to wake up in the middle of the night with terrible stomach cramps and "D". This would happen off and on for about year when it started to happen more often, and hurt much worse. As of now, the symptoms seem to disappear for a couple months, then suddenly reappear for 2-3 months. When I have the symptoms, I experence severe stomach cramping, it feels like my intestines are being twisted, I get lightheaded, feel like I am going to pass out, and have a BM that resembles thick mud (TMI, I know sorry) The stomach cramping can last 20 min to 2 hours. This can start anywhere from right after I eat to several hours later. It also tends to happen in the middle of the night. And it doesn't matter what i eat. When I don't have symptoms that severe, I will get a mild headache, slight intestinal pain, more of an ache really, brain fog, and I am extremely fatigued. I haven't lost any weight, in fact I have gained 30 pounds. Do any of these sound like symptoms? I have been without symptoms for a couple months, but I just know it is going to start up again any time. This has been happening for 4 years now. Any advice? Thanks

Tina...Mommy to

Justin 6, Aspergers

Kelsey 4, &

Megan 20 months, Developmentally Delayed

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Lisa Mentor
Lisa
Posted

Welcome Tina:

Four years is way too long for symptoms like yours to go unchecked!

Celiac can have up to 200 symptoms and many are the ones that you have mentioned.

Celiac can be diognoses by a blood test, endoscopy exam and biopsy or response to a gluten free diet.

I would recommend to you that you read as much as you can from this site. There is a wealth of information here and good people to answer your questions.

Lisa

Ursa Major Collaborator
Ursa Major
Posted

Hi Tina, and welcome to this board.

Your symptoms could very well mean you have celiac disease. And often autism symptoms and developmental delays can be symptoms of celiac disease as well. Those bms that look like mud sound just like me before I figured out the gluten intolerance.

One of my symptoms used to be uncontrollable weight gain. It seemed the less I ate, the more I gained. Fatigue is also very common, as is brain fog.

I suggest you get yourself (and your children) tested for celiac disease. Hopefully your doctor will recognize your symptoms as possible celiac disease, and will willingly test you.

Electra Enthusiast
Electra
Posted

Yup I had all of those symptoms and kept getting more. I had it for almost 3 yrs before I ended up in the hospital and found Celiac on the web about a month ago. I went to my dr. and asked to be tested (he knows my history and has been scrambling for a diagnosis for me) so he gladly did the test. I took in the informational packet that I had printed off from a reputable university study and he was surprised to hear some of the facts on Celiac. I think my dr. is now doing more research and will be more apt to test others with similar symptoms. To make a long story short I did test positive to a blood test for celiac, and I'm going to the GI specialist next week. I went gluten free because I was LITERALLY losing my mind and now I almost feel like myself again for the first time in years. I'm still exhausted, but the headfog is much better ;-)!! I'm getting very nervous that he will want a intestinal biopsy because I've been gluten free for almost 3 weeks now, and if they don't find anything he may tell me I don't have Celiac and I need that diagnosis so that my family will understand how life threatening this is for me.

Good Luck and I hope you get the answers you are looking for!!

happygirl Collaborator
happygirl
Posted

Welcome to the board! We are happy you have found us. That is a long time to deal with this...I hope you find some answers (gluten related or not!)

Celiac is an autoimmune disorder that is highly under-diagnosed in our country. Many, many doctors know little to nothing about Celiac, or know old/outdated information---and as a result, provide a disservice to their patients.

As a result of this, NIH has announced an awareness campaign to educate doctors about this. Open Original Shared Link and there are many good links on the left side.

I would recommend going to your family doctor with some information printed (from reputable sites, like www.celiac.com, the above mentioned site, or Open Original Shared Link Tell him you would like the FULL Celiac panel run (which includes the tTG blood test, which many doctors don't include).

Good luck, and let us know what we can do to help!

Laura

Tina81980 Rookie
Tina81980
Posted
  • Author

Thank you all for your replies. I have debated for quite a while about going to see a Dr. but, when I finally have had enough and decide to go, I start to feel good again, showing no symptoms at all. Is it even possible to have celiac or wheat intolerence or even IBS, and have all symptoms completely disappear for a couple months at a time, then suddenly show up again for months? As far as my kids, I never concered having my son tested until recently. I just didn't think it was an issue for him, as he had shown autism symptoms since birth. But, ironicly(sp?) just last night my Mother in Law asked me if my son could be having reactions to food. For the most part he does really well, then out of nowhere he acts completely out of control. So, I am starting to suspect food and additives. I know he reacts to red & orange dyes in drinks, now making his Dr. understand is going to be tough. I had to fight just to have him dx'ed by a neuro. My little girl, however, I have always felt was having reactions to food. She had severe reflux when she was switched from breast to milk based formula. When she was put on whole milk at 1 year she developed eczema, "d", and vomiting. So, she was switched to soy. The Dr. recently wanted to "test" milk again, which she tolerates now, but the eczema has returned. We also think she may be headed down the autism route, as she only says 2 words at just over 20 months old, among other things. Sorry again that this is so long! :o)

Tina

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