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13 posts in this topic

Hope no one minds the constant questions. But do thes sound like symptoms too?

Ringing in head/ears

Feeling faint even when resting

Burning itching feet

Disturbed sleep/ disturbing dreams

Strange blurry vision, almost like being underwater.

Trembling in limbs and some times whole body shaking

Typing words wrong way round

Feeling exhausted by conversation

Dry mouth/ sticky nasty taste in mouth

Thank you

Jo

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Hi Jo

 

Well, they sound like gluten-related symptoms to me. (I had almost all of those, too) but they could also be

 

caused by something else, so it is difficult to say for sure.

 

Here is a list of possible celiac- related symptoms and conditions.

 

http://www.cureceliacdisease.org/wp-content/uploads/2011/09/CDCFactSheets10_SymptomList.pdf

 

 

I know you are awaiting your test results, so you may wish to read a little bit while waiting.

Hang in there!

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Hi Jo

Well, they sound like gluten-related symptoms to me. (I had almost all of those, too) but they could also be

caused by something else, so it is difficult to say for sure.

Here is a list of possible celiac- related symptoms and conditions.

http://www.cureceliacdisease.org/wp-content/uploads/2011/09/CDCFactSheets10_SymptomList.pdf

I know you are awaiting your test results, so you may wish to read a little bit while waiting.

Hang in there!

Hi IrishHeart

I know they are also symptoms of b12 def which I have, but I am clutching at straws here ☺. I am also being tested for vit D def and I don't know what else as the nurse said the doctor had asked for several tests. She said he is very thorough so I am hopeful of some answers this time. Sounds crazy but In a way hope it is Celiac, then at least I will know something.

Jo

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Not crazy at all! I was THRILLED to learn it was celiac after years of living in hell. It was something treatable

and I was not "making things up" and I got to do the "I told ya so" dance! :D .

 

Believe me, many of us "get that part". 

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Yep... the "I told you so dance". Did you notice Irishheart even has it in her signature?  LOL

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The "I told you so dance" is nice -- validation is huge and sadly many of us had to fight far too much to obtain it.  This above all else is why I hang around celiac.com -- when I stumbled in four years ago -- others that were already dancing helped me.

 

Welcome Jo!

 

I hadn't seen your other questions...but keep reading and keep asking questions.  Good Luck with your results :)

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Thankyou IrishHeart, Lisa and Nicole. This is a lovely forum and I have found some welcome comfort here. And even if I am not Celiac I hope I can still keep visiting. Yes I had noticed that happy little dancer!

Jo

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hey guys, Jo is in the midst of a gluten challenge, so we are cheering her on!

 

http://www.celiac.com/gluten-free/topic/101386-anyone-feels-worse-in-the-morning/?hl=%2Bdozey#entry865664

 

and yes, I am dancing because at one point, I could not even walk without assistance. Lisa was in the same boat, Jo and she and I

are both so much better!

 

..........so do not despair. Healing happens!

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Thanks Irish Heart. I can't walk very far which of course isn't helping the agoraphobia. My husband insisted on getting a wheelchair and although it just doesn't feel right being in it, it does mean I can get a bit further without worrying about ending up on the floor. So, when I feel well enough I try to go a bit further each outing. If I do too much I pay for it the next day, so I am trying to pace it.

I had my blood test yesterday but typical for me can't get to see my new doc until next Friday. I am dreading him saying I need an endoscopy because there is no way at the moment. I nearly passed out at the surgery and that's only two miles away. The hospital is 23 miles. An epic journey for an agoraphobic!

Jo

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But for you to get to the bottom of this and stop the madness and get your life back, you may well have to do this, Jo.

 

I am not a drug pusher, but maybe you can ask the primary care doc for a small dose of xanax to calm you enough to get you to doctor visits. IMHO

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But for you to get to the bottom of this and stop the madness and get your life back, you may well have to do this, Jo.

 

I am not a drug pusher, but maybe you can ask the primary care doc for a small dose of xanax to calm you enough to get you to doctor visits. IMHO

I know this sounds as though I am being negative about everything but I can't take drugs. Even ordinary painkillers have an effect on me. I was given Diazepam some years ago and it just knocked me out for a few hours, then I felt worse when I woke up. So now I am afraid of taking drugs of any kind.

Jo

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I have similar issues with drugs, which is why I put up with chronic pain rather than take the stuff they give me,

so no need to explain. The one that did not make me yucky for days was when I took just  a teensy bit of xanax

before a dental surgery that was going to last over an hour. Without it, I may have balked at doing it and it had to be done..

 

I am just suggesting it as a therapeutic measure to get you out of the house.

Certainly, you should always do what's best for you. 

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I have similar issues with drugs, which is why I put up with chronic pain rather than take the stuff they give me,

so no need to explain. The one that did not make me yucky for days was when I took just  a teensy bit of xanax

before a dental surgery that was going to last over an hour. Without it, I may have balked at doing it and it had to be done..

 

I am just suggesting it as a therapeutic measure to get you out of the house.

Certainly, you should always do what's best for you.

I appreciate that. Maybe it's going back to the car crash we had in 2004, although I recovered from that and have driven myself about since, even did a stint as a taxi driver. Lately I just have difficulty going anywhere in the vehicle. I don't think we wil crash or anything but maybe it's just general anxiety.

Jo

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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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