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Hi there!

I haven't been officially diagnosed with celiac's yet but my doctor's highly suspect it. I had a few questions and was wondering if anybody more wise in the ways of this condition could answer for me.

Sorry if this is TMI but I went without a period for a year and a half. Nearing the end of this period I was getting severe pelvic cramping to the point where I went to the ER and doctors assumed I had cystic ovaries bursting. I was dizzy all the time to the point where I was put on sick leave from work because I looked like I was drunk because my balance was so off. I had extreme trouble focusing on what was happening around me at times.

I was diagnosed with a syndrome called Polycystic Ovarian Syndrome meaning my hormone levels were way off and messed up. This syndrome is highly associated with insulin resistance + diabetes, weight gain, thyroid dysfunction etc. I am completely free of any and all of these associations which has kind of stumped my doctors but I heard that eating low carb was helpful so I cut out root veggies and breads and cereals. I immediately noticed a huge difference in how I felt. My cramping disappeared, I had more energy. I just felt great.

Around this time I had a ultrasound done to check for cysts on my ovaries and I started to have some strange numbness, slight burning pain in my legs, at first I assumed that it might have been a running injury. Then the same pain started to radiate through my left arm and I decided to mention it to my doctor. He was concerned about the risks of blood clots from the birth control pills I was prescribed to control my PCOS symptoms and immediately ran a full blood panel and ordered some other tests.

My results came back that I was very low on B12 and am currently taking supplements. Meanwhile my ultrasounds came back to my OB/GYN who had mentioned that my ovaries were perfect with no cysts (another stumping!) but mentioned that my bowels and small intestine were severely inflamed and there was something going on to be causing me this pain but it was more gastrointestinal. I mentioned my B12 and arm/leg pain and he was the first to mention Celiac's and mentioned that it's likely my arm/leg pain was due to B12 deficiency and nerve involvement and might explain my dizziness and lack of ability to focus.

So I have blood testing set up for next month but I do notice a big difference when I eat breads and stuff. I read an overview of Celiac's online and was intrigued when it mentioned that Celiac's can stop periods. Soo I'm kind of wondering if it's possible that all my symptoms after all this time could be pointing back to Celiac's?

Sorry this is so long! I'm just really curious and was also looking for some direction on how to deal with it. I'm really quite overwhelmed with where to start.. especially with meal planning.. Anyways, thanks to listening fi you read the whole thing.

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Can't speak to the female issues, but B12 deficiency is classic celiac. If it is celiac disease, you will likely have a very hard time correcting that with supplements until your intestines are healed. If you are that bad off, I would suggest immediately getting blood drawn. Then, that very day, go gluten free. You can wait for confirmation from the blood tests, but if it is celiac disease and you're at that point you are likely losing nerve and bone tissue every day; you'll have a hard time regaining what you've lost, so don't let it get any worse.

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If it turns out that you have celiac, it would be wise of your doctor to order B12 shots for you, because you may not be able to absorb B12 naturally for a while. Some of us are on lifetime B12 shots. As for the periods, yes, I oftentimes went for long periods without having them. However, I also had the reverse happen--I bled for two years straight just before my celiac diagnosis. It's all hormonal and can occurred because our small intestine is not absorbing hormones properly.

You sure sound like a candidate for having celiac. I hope you're able to get to the bottom of this and start feeling a lot better soon.

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The malnutrition can cause you to stop menstruating.

It happens to those with Anorexia too.

The mechanism is the same...the body cannot afford to spend the energy on menstruation when you are completely malnourished. The malabsorption is the problem.

Once you begin healing you should start menstruating again if Celiac is the the problem for you.

B 12 deficiency is very common too.

The dizziness and drunken feeling are associated with the neurological symptoms of Celiac. That too, should resolve when you have been gluten free for some time. Gluten ataxia is when you have balance issues and that too is part of the neurological Celiac. I had the neurological symptoms clear up first. Except for depression and anxiety which took a little longer than the balance issues. Some have found that neurological problems are the last to go.

It's very lucky you had a Dr. mention Celiac to you. You are very fortunate.

As for meal planning, try to keep a lot of meat, vegetables and fruit and nuts around for you to eat. You will need protein to heal. Focus on getting enough protein.

Take vitamin supplements.

Read, read, read about trace gluten and cross contamination.

Rudi's and Udi's gluten free breads are good.

And because everyone needs a treat now and then, you should know that Snickers are gluten free. ;)

Welcome to the board. You will learn a lot here. Stay strict with the diet for a few months and see how your healing goes. If there are any symptoms that do not resolve then they might not be related to gluten.

Hope gluten free is as miraculous for your recovery as it was and is for mine.

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Thanks soo much everyone!

On your advice I'll actually be getting my blood drawn today and restart my Gluten-free diet. I'm pretty good with diet, we usually cook from fresh and very rarely eat pre-prepared foods. My problem is lately with school I'm having a hard time juggling cook time/study time. Sometimes I come home and just have no idea what to make and it feels like no time to make it. I tried meal planners and sharing cooking duties with my fiance but he hates being told what to cook so I'm kind at a loss LOL I just kind of gave up and have been paying for it with pasta and breads and feeling yucky.

I kind impressed upon him the importance of avoiding gluten if this is what I have and he was actually asking questions about what I can and can't have so that gave me some hope.

I've been totally shocked to learn that gluten can be found in seasonings and salad dressings and that has me totally overwhelmed. How I can be sure that something I'm eating doesn't have gluten?

ADDED AFTER - Ok apparently I'll be getting my blood drawn tomorrow. I went to the lab on my way to class and apparently the Celiac test is $125 at the lab but free at the hospital. So I'll be getting my blood drawn at the hospital tomorrow morning. It sucks because I ate a bunch of toast this morning anticipating the test and had to sit through lectures and labs all day feeling completely awful!

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