In Need Of Advice/answers

[ShannonLeigh]

I've never really used a forum for this, but here goes:

After some emotional stress about 4 years ago, I began getting really sick each night (hours on the toilet, nausea, vomiting, etc). I cut out dairy and discovered that the symptoms subsided. However, I began getting hungry all the time to the extent that I was never full - no matter how much I ate. I would feel light-headed and starving even after having a full meal. During this time, as I would fall asleep, I'd start having simple partial seizures because I was so starving and malnourished.

I went to the neurologist, who thought I was having "sleep apnea". Once the EEG showed seizure activity, he prescribed me medication. I told him that I thought there was a link to my diet and he brushed me off (being a 16 year old girl at the time - clearly not to my advantage). I've been wearing a band-aid, so to speak, using meds to control my seizures for the past few years. However, no one can tell me a physical reason why I kept getting them.

The past 4 years, I haven't been having normal bowel movements and have greatly struggled every day. From diarrhea to constipation to fissures and irritation - not something a 20 year old university student should have to worry about every day! My gastroenterologist tried me on medication, did a colonoscopy, and left me with "I don't know what more to tell you, you're not responsive to meds, you have Irritable Bowel Syndrome"... What I recently discovered was that when I asked him to test for Celiac, he did the colonoscopy of the larger bowel and found collagen (which he claimed was inconclusive and nothing to worry about). Reading online, I discovered that some claim collagenous colitis can be a symptom of Celiac. What the doctor should have been doing is a biopsy of the small intestine, where the disease is found. Needless to say, I was very frustrated when I figured this out (a few years too late).

I've also had incredible back/joint pain in the past few years (not very common for a healthy teenager) and have fertility issues (cysts on my ovaries). I'm always tired, always hungry, and have come to "accept" my health issues as unanswered questions that simply "are what they are". Until recently cutting out carbs for a week of "cleansing" did I realize that taking out wheat has completely changed my "IBS". Every day is easy and NORMAL. I never thought I'd see the day. I can't believe it.

Now, I want someone to tell me if it's Celiac or an intolerance or allergy, but I don't want to start consuming gluten again to have it show up on more tests (PLEASE no more biopsies haha). I just started feeling better and I don't want to go back. Does anyone have similar symptoms/a similar story/any advice?

Thanks so much, any feedback helps!

[ravenwoodglass]

Your story is all to familiar to many of us. Unfortunately you can not be tested for celiac without going back on gluten. One thing you could do is Enterolab testing, they cannot diagnose celiac but they can tell you if you are forming antibodies to gluten if you haven't been gluten free for a really long time.

Also you do not need a doctors permission to eat gluten free. As far as the diet is concerned it doesn't matter whether you are celiac or gluten intolerant, the treatment is the same.

[ShannonLeigh]

Thank you for your advice, and you're too right. I've just normalized all my symptoms because it seemed that if I had no explanation, they weren't as "real" almost, and they just became a lifestyle that was juuust being managed. I kept them to myself because I was tired of being high maintenance and complaining all the time, with no solution. But each and every day was a struggle up until last week, and I am so thankful I figured this out sooner rather than later.

[marietomates]

Thank you for your advice, and you're too right. I've just normalized all my symptoms because it seemed that if I had no explanation, they weren't as "real" almost, and they just became a lifestyle that was juuust being managed. I kept them to myself because I was tired of being high maintenance and complaining all the time, with no solution. But each and every day was a struggle up until last week, and I am so thankful I figured this out sooner rather than later.

i can definitely relate to you too. well, not the medical stuff you've been thru but the change you feel when you stop gluten. i don't crave bread or pasta ...i'm not really craving anything and i can finally go to the bathroom in the morning and it's normal! this is UNHEARD of for me. i'm not sure what my next step is, other than continuing to be gluten free. good luck to yoU!

[siligurl]

BTW, seizures could be caused by magnesium deficiency... I don't have full out seizures, but spasms that my friend-- a doctor-- says is likely magnesium defic. due to my gut problems and soda intake.

YOu can be tested for vitamin deficiency, including magnesium...

best,

Jennifer

[ShannonLeigh]

Thanks for your help! I know what you mean; I never thought anything would change - I figured that my body just didn't work the right way haha but I'm so glad that I'm not the only one going through this.

[ravenwoodglass]

Something that may help your nervous system heal a bit quicker is sublingual B12. It helps the nerves to fire correctly. Make sure it is gluten free of course.