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Trying To Find What I Have
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2 posts in this topic

Hi everyone! I was wondering if maybe you beautiful people can help me? But first let me tell you my story.

My problems began at the very young age of 3 months. I would hold my breath and only let go after awhile. My mom doesn't know the precise amount of time because to her it felt forever. I continued to do this for the next few months. Only be diagnosed with "She's a stubborn child, that's all. She'll be fine." Keep in mind this was 1991 and in South Texas.

I went through the next few years okay, with the exception of fluctuating weight. At the age of 12 during an all star softball game I began to feel as if I would faint. Cold sweats drenched my body and I tried to wipe the dizziness away. After my at bat (which I struck out) I told my coach I could not go back in, I wasn't feeling good. My mom came over to take a look at me and saw that I was pale with color also leaving my lips. People began giving me candy and Gatorade, thinking I had low blood sugar. I began to feel somewhat better just now with a stomach ache. By the next day I was good as new.

Then at 13, I began to feel a slight burning in my chest. My mom took me to the doctor and I was diagnosed with heartburn. With that appointment I also was told to see in a cup. It came back that I had a bladder infection and I needed to lay off the soda. After two weeks with minimal soda I came back for another and was given the same results. I decided I would give it up completely. I was proud of myself, I went one month without soda! I had only consumed water. I went back and same results again! I was tired, I didn't want to go back. That was that.

During high school I would complain to my mom that I sometimes felt like I was in a dream.Like in a fog or a daze. Other than that I was fine.

I approached college, and I began to get stomach pains. I went to the doctor and had many scans done and the next thing I knew I woke up with no gallbladder. Till this day the doctor has never explained why he took it out.

The pain continued on and gradually got worse. My sophomore year of college I found another doctor who wanted to check out my blood level, see how I was doing. She called me the day after with a worried tone telling me my atlases and liaise enzymes were through the roof. Along with low b12 and D. She asked me how I was feeling and I told her besides some stomach pain,I was alright. She began to check me every 3 months getting the same results. Only a few times were the pains in my stomach so unbearable I cried, almost calling the ambulance. I decided to stretch out on my floor and focus on breathing. I fell asleep.

My senior year of college my left eye began to hurt. Next thing I knew my vision began to blur, this was my first migraine. Went back to the doctor, where she told me I was under a lot of stress with graduation coming up and all. I was like, "Yeah she's right, she's the doctor." I left it at that. Meanwhile I had another check up for blood work. Again the next morning a nurse called me with the results worried cause my levels were high. By this time this call was normal for me. They would be high but no doctor could explain it. They would also tell me while my pancreatic enzymes were high, my b12 and D were getting lower, upping my dosages. Though I would stop taking them because I would get sick.

This leads me up to now, same blood results high atlases and liaise and low b12 and D. But this last visit a new one occurred, low iron. I have always had cold hands and feet, yet now I feel cold all the time even when outside sometimes (and I live in TX).

I hope you all can help me, please? Thank you!

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    • Thanks Stephanie & Gemini for the info. that the 4 of 5 doesn't apply to children. I wasn't aware of that until now. 
    • I think the posters above have given you very good information and I will throw in my 2 cents worth.  I am surprised that they did not test her DGP IgA also.  I am sure that would have been positive.  They switched off with antibody classes and usually they do both tests for both antibodies.  IgA is more specific to Celiac but the IgG is also useful.  The testing shows your daughter is producing antibodies to the gluten in her diet. (DGP IGG). THe tTg shows positive for some damage or inflammation. You know........your daughter is only 4.  She hasn't been on the planet or eating gluten that long. It can take years for enough damage to occur for it to be able to be found on biopsy.  I would say it is highly likely that this is Celiac, especially with her symptoms. But because the damage hasn't graduated to bad enough yet, they won't diagnose her. I think you need to do what others have said and get all copies of testing and find someone else who will take a look and give a diagnosis, especially if they have you do a dietary trial and her symptoms go away.  That might be the only recourse if you want faster proof. I know I would want faster.  I would not really be happy if I thought I had to keep feeding her something that was making her sick.  If you keep her on gluten long enough, the diarrhea will probably show up. BTW.........the criteria mentioned regarding diagnosis does not apply to kids.  I know it's silly and stupid but most leading Celiac specialists do not go by this criteria for kids.......adults only.  Keep that in mind because it might come up.  You could recognize it but they might not. Have you considered gene testing, to help bolster a diagnosis? As far as false positives go, it's the other way around. False negatives happen more frequently than many people think.  It's a recurring theme here.  With her symptoms, which is what I had, a bloated belly and tummy aches are telling.  Have they tested her for lactose intolerance?  That can cause similar symptoms, although it sure won't raise those 2 blood tests.  Keep looking for Celiac because there are many red flags here.
    • This 4 out of 5 criteria does not apply to children. I was never given a reason why, but it isn't.     That said, you may try to get a second opinion from another GI who may be willing to give her a firm dx.  We were in your boat 6 years ago and while I'm sure I'll get slammed for it, I wish we had kept gluten in our kiddos diet till he scoped positive for a variety of reasons.  Again, even family is different and you have to find what is best for you!
    • Mnoosh, I had swollen lymph nodes prior to celiac dx and for a while after going gluten free. My neck as well as groin. The groin ones were the worst. Guess what? All gone! It's hard to recall a time line & consider that everyone is different but I think mine completely resolved within a year.  You've been given great information. Just breathe and then again, breathe. You're going to be fine. 
    • It is the only thing you have eaten, so it can't be anything else?  I eat it with no issues so I am not sure how you can be certain that is the problem.  All I am saying is that its sort of "your word against mine and the company's word".  
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