Very Much A Newbie Here

[SeeBee]

Hi guys

I'm a 32 year old newbie to the whole Gluen Free world. I had a blood test yesterday and am waiting until Monday to get the results. Got my thyroid tested at the same time, but I'm 99% sure that's not an issue. So I've been doing a tonne of research over the last 24 hours, and came across this little gem of a forum. I'm Australian, and can't seem to find any celiac forums catering to us. So, here I am

I've been quite ill over the last 3 years or so, and have tried to get to the bottom of the problem for just as long. After going through about 7 GPs, not one had suggested a celiac test. Yesterday, I said to my current doctor "here's a thought; what if all my problems are related to what I'm eating?"

Here's how I came to that conclusion:

I've been having major issues with digestive problems, mental health (depression and anxiety), extreme fatigue (like, general dragging my feet through the day, but when an attack hits, I must sleep and I must sleep now!!!) and inability to gain weight after dropping a whopping 30 kilos in under a month after stopping antidepressants. Bloodwork has mostly come back fine, apart from low B12. Not anaemic. A few days ago, I cooked hot dogs for my daughter, and had one myself. 3 hours later I felt like I had been drugged and had no choice but to sleep. I slept for about 45 minutes before I woke up really groggy and disorientated. I really got to thinking as to why this would keep happening. I remembered that I got the exact same reaction when I was taking my B12 sublingual tablets. I had to stop taking them because I couldn't function. (My dr thought I was crazy when I told her as B vitamins are supposed to pep you up, not put you to sleep.) I got a B complex tablet instead because it had less B12, but still some. I thought it would be better. after my hot dog episode, I got out the vitamin bottles and had a look at the ingredients. The B complex said "Gluten Free", whereas the B12 bottle said nothing about being gluten free. It was a bit of an "aha" moment. I also recalled my mother once saying She took me for allergy testing and they said I was gluten intolerant, but she just fobbed it off and thought nothing more of it. This was 25 years ago or something.

Anyway, so that's when I went to my doctor the next day and she thought there was some method to my madness and ordered a celiac test. I have no idea what that involves, as the pathology request sheet just said "celiac" and "thyroid".

Here's my concern though. I don't want to put all my eggs in one basket, but to find out that I can fix the hell I've been enduring for the last 3-5 years would be such a relief. I've been thinking though, I don't get the same symptoms every time I eat gluten. Like, as far as I can recall, this is the first time I've had an episode after eating a hot dog. Yet, I had a bite of my daughters McDonalds cheeseburger and a few of her fries at lunch today, and I had another attack (slept for about the same period of time too). Is this "normal" for a Celiac/NCGS/gluten intolerant/whatever person? It's it possible that being "that time of the month" could make symptoms worse?

What do you think? Could it be a gluten reaction? Am I on the right track? Can anyone shed some light?

Thanks!

Ps. Sorry for the long post. I've very overwhelmed, and scared, and confused, and needing to vent to someone who doesn't think being gluten free is just a hipster fad.

[ravenwoodglass]

Welcome to the board. 

I did find my symptoms to be worse at that time of month and they also came and went for years before the serious issues became a daily occurance. Do not go gluten free until after all celiac related testing has been finished as that will cause a false negative on testing.  With the symptoms coming on after a meal do make sure your doctor has tested your blood sugar complete with the A1C if it hasn't been tested already. The drowsiness could be a blood sugar crash so it would be a good idea to rule that possibility out also.

Hope that you get some answers soon.

[SeeBee]

Thanks for your reply. I'm not sure what the A1C test is, but I ended up in emergency with a syncope about 3 weeks ago and believe my blood sugar would have been tested (I don't know for sure because I never received my results, but one would assume it would be standard practice in such a situation). I was just told all my blood work was excellent.

Would it hurt to try gluten free for a week or so see if some of the fatigue and anxiety lifts? I do have a GE appointment, but it's not for another 8 weeks or so. That way I can say "I tried X, and Y happened" I'm really, REALLY suffering with whatever is going on with me, and just a teeny bit of relief would be most welcome.

Thanks again

[Josep]

Thanks for your reply. I'm not sure what the A1C test is, but I ended up in emergency with a syncope about 3 weeks ago and believe my blood sugar would have been tested (I don't know for sure because I never received my results, but one would assume it would be standard practice in such a situation). I was just told all my blood work was excellent.

Would it hurt to try gluten free for a week or so see if some of the fatigue and anxiety lifts? I do have a GE appointment, but it's not for another 8 weeks or so. That way I can say "I tried X, and Y happened" I'm really, REALLY suffering with whatever is going on with me, and just a teeny bit of relief would be most welcome.

Thanks again

 

I had some of your problems before being diagnosed (went 22 years with the disease) but crashes were only frequent later on. I remember that after eating a lunch with anything containing gluten, I immediately went into "sleepy" mode....it wasn't fun when I was moderating a medical congress and fell asleep during the talk :/

Regarding your doubt, I really think you should be doing a normal diet even if your appointment isn't for another 8 weeks or so. It would probably give you a false negative during antibody testing if you go gluten-free and some GE never do an endoscopy if the antibody serology is negative. I had negative serology (despite not being gluten-free) and a positive biopsy with quite a big amount of destruction in my intestine but I was lucky my GE decided to do the endoscopy anyway. So, don't play with chances and think of it as a little sacrifice to be sure on your diagnosis later on

[cyclinglady]

Keep eating gluten until all testing is complete. Check out the University of Chicago's celiac website which is one of the leading research hospitals in the U.S. to confirm my advice!

It can take weeks or months for someone with celiac disease to feel better. Chances are, going gluten free for a week is not going to improve your health. Heck! I only had anemia as my main symptom and that took months to resolve!

Be patient! I know it is hard to wait for results!

[SeeBee]

Thanks guys.

I'm not really looking to do any healing in that time. I just want to know if the gluten thing is, in fact, the cause of my extreme drowsiness. My theory is that if the gluten is causing me to fall asleep within 4 hours of a meal, then If I don't have any gluten and still fall asleep, then it's fair to say that something else is the problem. Sounds good in theory, but I wanted to put it into practice for a bit. I just need to somehow put my mind at ease, because these "narcoleptic episodes" (as I call them) are ruining my life. I'm a single mother with a 4 year old who is as energetic as they come. She's been missing out on things because of this. Kinder, swimming, play dates, etc. It's not just me who is suffering. I can't work, I can't (won't) drive, and I'm utterly miserable with anxiety off the charts.

What if I compromise? What if I cut gluten from breakfast and lunch, but gluten myself at dinner? That way it doesn't matter so much if I fall asleep. Will that still give me enough antibodies to appease the GE, and not sway the biopsy test too much?

This is all so overwhelming and the feeling drugged and falling asleep thing has only reared its ugly head within the past 12 months, but has only recently (the last couple of weeks) been a regular thing.

Thanks again for the input guys, I really appreciate it

[cyclinglady]

You only need about 1 to 2 slices of bread daily to meet a gluten challenge. You can eat it all at dinner. I am not a doctor, but the sleeping issues may not be related to gluten at all. Not saying that you might not have a gluten issue, but they could be separate issues.

[cyclinglady]

Here is a link to an an posting with our forum about narcolepsy.....

https://www.celiac.com/forums/topic/68207-tiredness-poll/?hl=narcalepsy#entry605872