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Symptomatic... Stomach Migranes?
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I was diagnosed with Celiac in Nov. 2004 and have been a die-hard gluten-less person ever since. I still have severe stomach aches every time I eat. I have been to doctor after doctor... nothing is left to diagnose me with except so-called stomach migranes. Has anyone heard of them? Got any other ideas of what could be wrong? I'm off of sugar, gluten, dairy and fruit...

Thanks,

Camila

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I was diagnosed with Celiac in Nov. 2004 and have been a die-hard gluten-less person ever since. I still have severe stomach aches every time I eat. I have been to doctor after doctor... nothing is left to diagnose me with except so-called stomach migranes. Has anyone heard of them? Got any other ideas of what could be wrong? I'm off of sugar, gluten, dairy and fruit...

Thanks,

Camila

Cyclic vomiting? I got that diagnosis, which I believe was false, about three years ago. It's a migraine that manifests itself, primarily, in the form of vomiting, stomach aches, etc. often with light flashes, etc. I think that was just a combination of my other two REAL problems. They don't really know much about it and you can't test for it. I was told that it's a childhood thing (I was about 11 at the time) and that I would outgrow it in a few years. Is that what you're referring to?

I have no idea what could be wrong. It sounds like you've had everything checked (all associated problems, etc.). Have you had bloodwork or a biopsy to make sure there's no gluten in your diet? This is not a jab at your diligence, but even in the most paranoid person, you could be getting contaminated from a product or ONE product might have slipped through. Let me provide the following example: Hershey's makes a gluten-free chocolate bar...the kisses ae also gluten-free, and the "miniatures" (about the size of one square of the regular Hershey bar) are gluten-free--if they're in their own bag. But in the bag that is a mix of Krakel, Hershey's, etc., they AREN'T. The same paste (containing malt) is recycled for all of them. That's just an example of how easy it is. Have you checked toothpaste, all food, medication, lotions, and make-up?

Also, I know you've posted before, but I just want to take the opportunity to welcome you to the board! :) I hope you can find an answer...I went about a year into my gluten-free diet with all this other testing before finding my alternate problem. I hope you can find it sooner... ;)

-celiac3270

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Thank you so much for your reply. The vomiting is not an issue... and I think the migranes are very similar to head migranes just in the stomach. I will find out more from a neurologist in a month or so.

I have had my diet checked for gluten via a breath-hydrogen test. The GI doc says I'm doing well and that my villi are mostly back to normal, so Celiac isn't the basic problem now. He also mentioned lymphocytosis for my chronic constipation. Have you heard of that?

Thanks for the warm welcome!

Camila

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Have you been checked for pancreatitis or gall bladder problems? These can both cause severe pain near the stomach area since these organs are right beside the stomach.

I still have severe stomach aches every time I eat.
That is a symptom of pancreatitis.
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I had a full gall bladdar test done (actually, three) and they all said that my gall bladdar's fine. I haven't looked into pancreatitis. That's a good idea! Thanks!

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Hi R.

My son is 12 yrs. old and was just dx. with gluten intolerance from the pediatrican, we are awaiting an appt. from the GI doctor. However,I had been on regular visits complained about my sons headaches and stomach problems. he was also dx. in 2000 with stomach migranes and given two meds. to deal with it. Now I think it was the gluten all along.

My sons Dr. at the time told me they were pretty common in children.

Hope your feeling better soon! Sounds like your having a rough time.

Sincerly,

Annie

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I've heard of stomach migraines. I was looking into that last fall before going gluten free for myself. Evidently, something like 50% (I don't recall the actual figure) of your body's serotonin is manufactured in your gut, as opposed to your brain. Since serotonin dictates how your blood vessels in your brain work, fluctuating levels can cause migraines. I know that the meds that work for my head migraines, triptans, do something to regulate the amount of serotonin in your head, therefore regulating your blood vessel action and causing the migraine to stop.

The articles I read were discussing whether or not this is similar to what happens in some IBS patients. I have noticed sometimes when I take a triptan for my head that my stomach improves.

If I find the links I read about this, I'll post them. I think I originally came across this topic when I was researching a supplement called 5HTP which I take - it is being considered for migraine help.

Stephanie

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Hey

I have stomach aches too, except its not after every meal, but it is every day. <_< It hurts on the left side of my stomach. Is this not stomach aches after all? Please help!!!!

If you think you know what it is.. please e-mail me! Thanks!

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Camila, I have heard of stomache migraines also. A friend of mine was also being tested for everything until they decided he was lactose intolerant. About three months later they changed his dx to stomache migraines, and put him on beta-blockers. I don't know the significance of this, but he has seen lots of improvement and can even handle lactose again. I know this isn't a great medical explanation or anything, but maybe it gives you some idea where to go with your research. Good luck.

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Thank you all so much. Sorry I didn't respond earlier... I have been out of town.

I am going to see a neurologist in a couple of weeks to check out the stomach migrane possibility.

Stephanie-- that's so interesting about the Seratonin!

mlwaller-- I have done an elimination diet and have pretty much ruled out lactose intollerence (well, most intollerences...) that's why I became sugar-free. I know lactose gets a lot of people, and it runs in my family. I will deffinetly ask about Beta-blockers!

Thank you all so much! This helps a lot. I hadn't even heard of stomach migranes before. It's nice to learn that it's out and about in the Celiac community :)

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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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