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Newbie! Found My Way Here Via Migraine And Genes!

Beccels

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Beccels Rookie
Beccels
Posted

Hi Guys!

I hope you can help. I am slightly annoying, I simply have to understand everything and anything immediately other wise it drives me nuts! So here I am.

Long story short - for over 10 years I have had really disturbing and scary Neurological issues. Turns out, it is migraine related but not actually a migraine in any aspect. Its technically 'prolonged aura (derealization) with out infraction'> . I lived about 8 years of my life in hell. No dr knew what it was and I was told that I had emotional problems and that it was just panic attacks. Its was kinda awful. I couldn't work, lost all my friends ... even just watching TV was scary!

Anyhoo .. due to my instant and positive relief with the commencement of abortive migraine meds, we finally figured it out. Although, lots of side effects with the meds.

Here I am today, typing away madly to you all ... as, my Dr has decided to look for the cause. She put me on a diary, gluten and wheat free diet 4 weeks ago. We got my gene test back .. and I have the Celiac gene! We only got this result in on Thursday.

Turns out my Aunty of my Dads side has the gene and she gets typical migraines! My other Aunty also has gluten problems but unsure of the details. I was amazed!!

Blood tests concluded that I wasn't Celiac. Although at the time of the test I had been on the diet for a little over a week. I dont know if this makes any difference or not.

I had a few questions. One in particular relates to my gene test result and if anyone can interpret them. I can't find much info on the net which I can make sense of!

My Dr says its impossible to tell if I am currently gluten intolerant or similar? Is that correct?

Is it correct that blood tests for celiac (not the gene tests) can be hit and miss?

Here is my gene test result. I know testing functions vary from lab to lab, and as I am in Australia - it might be different in other parts of the world, but here it goes:

"Heterozygous for the DRB1*07-DQA1*02-DQB1*02 haplotype which is consistent with the DQ2 phenotype"

I understand the theory of DQ2 and DQ8 and you can have multiples of either. Although I was just wondering if anyone can explain the above a little?

Thank you very very very much, for reading my loooooooong post!

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mamacpj Newbie
mamacpj
Posted

My husband was having eye problems. Iritis and Episclaritis (spelling??) off and on for approximately 3 years. We did some research the first year and we supplemented with Lutein and other eye health vitamins which seemed to help for approx. 1 1/2 years, then the problems reappeared. His mother has celiac disease and she too had eye problems at the same approx. age (50 years old). His sister has thyroid problems (cancerous) and she too at the age of 50 realized that she is celiac. My husband went off of gluten after reading posts online about celiacs having eye problems. His eye condition cleared up and he went to the doctor who sent him for the blood test. His right eye had cleared up being off of the gluten and he had to go back on the gluten for the blood test and within 3 days of eating gluten, his left eye came down with a completely different eye condition. The test came back negative. His eye specialist cannot explain the cause of the eye conditions and believes that he should just eat wheat/gluten and treat these conditions as they appear. We totally disagree. He is considering the genetic testing, mainly for our son; so we can confirm that my husband carries the gene, and what the chances of our son having celiac. The whole family had no major symptoms until mid 50s; may be due to aging and your body not being able to tolerate wheat/gluten any longer. I am not celiac and eat gluten/wheat free and I feel much better. If I do have wheat/gluten now, I really notice how it makes me feel sluggish. I had lasagna a few days ago at a friend's house and was up all night with stomach cramps and an aching back (the wheat/gluten) does not digest so it causes gas to be trapped in my back and my back then hurts until I can pass the gas. Not a great topic but it may help others. I am not really answering your query but I would say that even though your test came back negative, I would eat wheat/gluten free and see if your symptoms get better.

Beccels Rookie
Beccels
Posted
  • Author

Wow! What an amazing story.

Oh gezz ... some Docters! How can the Doctor ignore the evidence? I have heard that lost of Dr's don't like to actively diagnose Celiacs as there isn't much money involved in it for them. I would hate to think that, but I have read it so many times - and hearing your story ... it really does make you worry!

I've been on my diet for 4 weeks now. I would say I have it at 100% yet, but I am giving it a really good go. The problem I have is reading ingredients and understanding all the different terms which ultimately result in wheat or gluten. So bits and peaces are still getting in by mistake.

On the weekend I went to a birthday party, for the little girl of one of my clients. There was cake. hahha! Hmmmmmmmmmm ... cake. I did well, I just had some salad and some meat (it was catered!), I didn't have a bread roll with butter even though this is my absolute weakness. So I thought I would give the cake a go and see what happens. I had two little pieces. All fine ... When I got home 1 hour or so late I had this real pain on the right side of my gut. It hurt more when I moved. It only lasted for about 5 minutes but it was weird. I don't know if I am now looking for a reaction or if it actually was a reaction?

Nightingale8472 Rookie
Nightingale8472
Posted

I got migraines about 5 days a week for about the last fifteen years. Been on the gluten-free diet about two weeks now, after finding out that a biological aunt and possibly a grandmother (I was adopted) were celiac. My blood tests were negative. My experience, however, says otherwise, because I tried the diet anyway, and it seems to be working. Over the last two weeks, my migraines have been about a third of what I would normally have. I keep a headache diary, and I track every single headache. Before, I got a ton of what I called "random" headaches... headaches where I couldn't figure out any kind of trigger. They'd just show up for no apparent reason and make my life hell.

The few headaches I've had over the last two weeks, I can pinpoint the exact trigger, and even those have been improved. For example, going to the movies has always given me a migraine. Pretty much within the first 15-30 minutes. On Saturday, I went to see Avatar, in IMAX 3D (awesome movie, btw... a must see) with no migraine medication at all. I didn't get a migraine until 2 hours into the movie, and it wasn't even a very bad one. Previously when I tried to watch a movie without migraine meds, it put me in the hospital with the Migraine From Hell. So, now, I can not only watch a movie without meds, I can watch an extremely visually intensive movie in IMAX 3D, and only get a bit of a headache towards the end.

So far, I haven't had any desire to cheat on the diet. I keep my fridge stocked with tons of yummy gluten-free foods, have a blackberry ap that makes shopping and eating out pretty easy, and I've always got Larabars with me for moments of weakness. If you have a smartphone, get the ap from clan thompson. It helps so much about what products are gluten-free. There's a cheaper ap from Blackberry ap world, but it only works on certain blackberries. There's also a good iPhone/iPod-touch ap. And if you can't find what you want to know in the ap, you can just google. I spend so much time on the ap and googling while I'm shopping, but it lets me know that what I'm buying is safe. Also, if you have a Sprouts or Whole Foods, they have gluten-free labels or lists they will give you to take the guesswork out of it. Trader Joe's too.

Living off gluten is way, way better than living on painkillers and migraine drugs.

Beccels Rookie
Beccels
Posted
  • Author

Hi!

Thanks so much for your post!!

You simply must tell me the blackberry ap! I have a blackberry curve. Yay! Excited!

Ohhh .. I have been on my diet for about 4 weeks now! Only in the last 1.5 weeks have I started to feel ... good! I have been detoxing though as I am off wheat, gluten and dairy.

Nightingale8472 Rookie
Nightingale8472
Posted

the app from Blackberry is just called "Gluten Free" and you can get it from here: Open Original Shared Link

The one I have from Clan Thompson is here: www.celiacsite.com

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