Complex Migraines + Gluten Intolerance = Celiacs?

[foodlens]

Hey,

A quick synopsis of why I am here: I'm 16 years old and three months ago I started feeling sick after everything I ate, and I decided to keep a food and behavior/symptom journal until I could see my doctor. I thought it was because I was still adjusting from living in Italy for two months (which is SUPER GLUTEN EVERYTHING) in the sense that I was no longer used to American food, the water, etc etc. After about a month of analyzing my food journal, I realized that I felt really, really bad after eating wheat. I was constantly crying, always hungry, itchy everywhere, had gas, had constipation AND diarrhea, was nauseous, always tired and I had difficultly remembering things. I talked to my mom's boyfriend who suggested that I not eat wheat for a week and see how I felt. I went a week without wheat and felt better (not absolutely amazing, but way better), so he concluded that I should see my doctor about having a gluten intolerance or celiac disease.

I went to see my Primary Physician (who didn't deny my intolerance, and was like, maybe this would explain your other health problems!) and he referred me to a cardiologist (for my chest pain and heart palpitations) and a gastroenterologist, and prescribed me Protonix to "help me digest normal food". He also ordered a celiac panel. I am currently waiting for my referral to see my gastroenterologist to begin blood testing.

..

A week ago I had to go into the ER because I started experiencing symptoms similar to a stroke. I had weakness & numbness on my left side, the left side of my face drooped, had extreme heart palpitations, had difficulty walking, and I also had shooting pains up and down my left side. I take >1 g of Q-Pap for pain every day (even though my heart feels like it's gonna explode, but at least the pain is gone) and the ER doctor diagnosed me with "Complex Migraine Syndrome".

I also take 900 mg of Lithium for Bipolar Disorder, so I cannot take any medication to prevent any future migraines. I am now referred to a neurologist because the left side of my body continues to be numb, and also my hands and feet. My left face still droops, I have these incredible headaches, and I am always dropping things because of the shakiness of my hands. Which, the ER doctor told me, are affects of the complex migraine.

I am still (and currently) having teese more neurological symptoms alongside my "normal" celiac affiliated symptoms.

I was wondering, does Complex Migraine Syndrome has any connections to Celiacs? Does anyone else have this problem?

These crippling symptoms have kept me from going school and doing other things I really love. I felt really lost until I found this forum because I do not have anyone to talk to about this (aside from my mom's boyfriend, but my mom is really sick and I want him to care for her). I am hoping this sounds familiar to some of you!

Thank you so so so much.

[ShayFL]

I do not know if gluten is what is causing your migraines, but I can tell you that since I went gluten-free I have not had one (except one small one when I got CC at Whole Foods). And I used to get 2 or more a month. I am migraine free!!

I really hope you get to the bottom of this soon. It is no way to live and I feel for you.

[lizard00]

Same with me. Daily headaches, migraines depending on how much gluten I ate. (ex.... pasta, dessert, cereal, bread... all in the same day) Some days I wondered how I could hold my head up.

I rarely get headaches any more, except on a glutening or with the seasonal change, like right now. But nothing like that ones before. I hope this helps, and I hope you feel better soon!!

[dizzygrinch]

Im not diagnosed yet, but since I stopped the gluten, headaches stopped too. I would have them really bad, sometimes lasting a week straight....

[veggienft]

If you stop eating gluten and get well without a diagnosis, what will you have missed?

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[SGWhiskers]

I hope things with your complex migraine get better quickly. I had chronic daily migraines before going gluten-free. I was diagnosed with basilar/vestibular migraines. My migraines gave me very very mild stroke like symptoms, but nothing as serious as what you describe. Keep exploring with your doctors, but I see no reason not to go gluten-free this instant. It can't hurt.

Wait, did you say you are waiting to get blood work done? Call your regular doc and see if you can get him/her to order the blood work tomorrow and have the specialist review the results later. Then go gluten free right after you have the blood drawn.

Also, with stroke like symptoms, I'm not sure I would let the doctors delay with any kind of additional diagnosis or clarification of a diagnosis. Your symptoms are serious, and hopefully your doctors are treating you well and swiftly.

I really do hope you feel better soon.

SGWhiskers

[jerseyangel]

I had weakness & numbness on my left side, the left side of my face drooped, had extreme heart palpitations, had difficulty walking, and I also had shooting pains up and down my left side.

Gosh, you poor thing. I had those exact symptoms right before I was diagnosed. My headaches felt like someone had literally hit me in the back of my head with a two by four. Just turning over in bed was painful--between the headache and the hip pain.

I'm glad you are being seen by a cardiologist as well as a gastroenterologist. I had a complete cardiac workup, which thankfully revealed that my heart was fine. It's good to rule that out.

I had tingling and numbness all along my left side--from my face to my toes. On the right, it was from my knee down. Once I went gluten-free, it took some time for this to lessen--it didn't happen overnight and even now after 3+ years, I will occasionally get some facial numbness when either glutened or extremely tired.

Best of luck with everything

[foodlens]

ahhh everyone:

Thank you so much for your replies. I've been going crazy at home with my mom trying to convince me for the past week that they are completely different (those two things being my complex migraines and my "non-existent" food intolerance).

The hardest things right now is waiting for my referrals to see my doctors, the costs to see my actual doctor consistanty (co-pay went up this year), and my mother's unwillingness to pay for all the tests for something she believes is all in my head.

it's comforting knowing that these migraines aren't wayyy out there, and that eating gluten can effect them.

its also disconcerning that a lot of you have migraines due to gluten, but its comforting knowing i'm not the only one.

If you stop eating gluten and get well without a diagnosis, what will you have missed?

I don't think I will miss anything. Its something I really want to do--stop eating gluten and move on with the rest of my life. But It's difficult when my mom gets really angry at me for not wanting to eat anything she's made, and when she makes off hand comments about how all my disorders are in my head, and that this is too..

She needs an actual diagnosis so she can go ahead and help me make our house gluten free. I am a junior in high school, and in a year and a half I will be off on my own, but she is still my mother, and any diet changes and what not need to be supervised by her. At least thats how it is for me because lately I've been forgetting to do simple things like taking a shower or taking my medication.

She likes things to be official, and for my mom I have to wait.

[veggienft]

Got it. Good luck with your diagnosis and your mom.

..

[Fiddle-Faddle]

They may or may not be two different things, but I'd bet that in your case, gluten may very well be causing everything, including bipolar syndrome.

You might try googling "gluten bipolar" "celiac bipolar" "glulten migraines" etc, and see what comes up.

If you need to convince your mom further, you might google any of those along with the word "study," and whatever medical studies there are ought to pop up.

The problem with going for testing is that you need to be eating LOTS of gluten for 3-4 MONTHS straight in order for the celiac blood panel and endoscopy/biopsy (if the doctor decides that's necessary, too) to be accurate. The blood tests measure antibodies against gluten. If you're not eating it, you won't produce the antibodies--and your tests will be negative and the doctor will say you're crazy, of course you can eat gluten! (The doctors frequently don't know this, BTW--until recently, celiac was thought of as 1 in a million, so they never learned more than a sentence or two about it in medical school.)

If your symptoms have immediately improved or resolved, I don't know if your mother really wants you to poison yourself again by eating gluten for another 3-4 months. (If the doctor says you don't need to, I'm sorry, but he or she would be really wrong on that.)

Best of luck to you, and please keep us posted! And tell your mom that many of us here have gluten-free kitchens, and kids who love pasta and pizza and bread, and all that stuff, and that we know how to make them all gluten-free AND tasting good enough for the gluten-eaters to enjoy!

Maybe you can invite your mom to join this board, or at least read this thread. She is certainly welcome to post whatever questions and even doubts she has, and people who have "been there and done that" will reply.

P.S. You might search on this board for "DingoGirl," who also has bipolar, and has written a great deal about how it can be triggered by gluten.

[foodlens]

They may or may not be two different things, but I'd bet that in your case, gluten may very well be causing everything, including bipolar syndrome.

You might try googling "gluten bipolar" "celiac bipolar" "glulten migraines" etc, and see what comes up.

If you need to convince your mom further, you might google any of those along with the word "study," and whatever medical studies there are ought to pop up.

Ahhh, see, I do not need to convince my mom on how there are connections between my gluten intolerance and being bipolar. That's not the issue at hand. We know quite well that I have bipolar, alongside PTSD and General Anxiety. I don't know--it's difficult to articulate, but thank you. I have read a lot on the connections of bipolar and celiacs, which is why my therapist is so excited for a diagnosis--so she can tell my psychiatrist to get me off my meds!

My mom is actually really sick--she is 35 and was diagnosed with pulmonary arterial hypertension, and her doctors found a hole in her heart all in the past 3 months (she is not from this country, which is why they didn't find it at birth; i am first generation in my family). She's already super stressed out about her other life-long condition (which I don't feel comfortable enough sharing because it's not my condition), plus her recent diagnosis that she's just sort of crashing. I spend a lot of my time making sure she's okay and helping her out with food because she already eats a pretty restricting diet.

I don't know, maybe its a cultural thing, but she wont listen to me unless a doctor gives a final yes/no.

Also, my mom goes to Stanford for her heart conditions, so if (or rather, when) I am diagonsed with Celiac, I can be treated at the Celiac Center at Stanford. I am really lucky that my primary physician knows what Celiac is, and immediately after I gave him my list of symptoms he said "I will order you a Celiac Panel". Exactly what i wanted to hear!

She's a pretty busy lady, and I don't want to overwhelm her with the idea that I have been finding support outside the realm of my close friends and family because they have already seen me in so much emotional pain my entire life, and now that things are finally "shaping up", I feel like (and have been told) that i am just complaining and that i just need to deal with it. but ehhh.

just need to poison myself until i see my doctors and get a final conclusion for my mom. and everyone else.

[frogleggs]

Hi: I am going thru this now. My headaches are so severe, I think I am having a stroke. I was tested thru biopsy for celiac which was negative, My gluten test panel was negative on all but one! That is where they left me at. If I eat a lot of bread, cookies, etc., my allergies kick, congestion, feeling sick in the stomach, etc. I also develop yeast problems from this. Sometimes I get panic attacks with these also. It is so complex and scarry. I don't gain weight easily and I need to eat rich fatty foods. Then I am sick again. I also get compulsive when going thru this. I go on crazy shopping sprees with no judgment option. It never fails. Can someone educate me on how many panels are in the test and if 1 is positive what does that mean?

[SGWhiskers]

Oh, Froggleggs,

I'm going to start you a new thread. Everyone will help you. Dig out the results of your blood panel, and I'm sure someone will help you make sense of it.

SGWhiskers

[Rayne]

First, just let me say, I sincerely hope the situation has improved with your mother and your diet. Have you found any answers to the questions from your last post? I was diagnosed with Complex Migraines in February of this year. I'm having a really difficult time learning how to "live" with this health problem. I've been searching for a support group for complex migraines sufferers since I returned to the bay area. So far I haven't found a single one. Do you or ANYONE out there know where I can find a support group for this?