I'm New... Could I Be Celiac?

[DaisyJane]

Hi guys,

I know you must get many many questions like this, but I guess I'm just looking for reassurance at this point. Please bear with me while I tell my story...

I don't know if this is relevant but when I was little I had problems with balance, lack of coordination, weak muscle tone (I didn't walk until I was 2 and a half). I recall some of these issues being linked to celiac so thought I'd mention it.

Besides the above, I was never a terribly healthy child I don't think, but I don't recall having overt health problems until I was around 14 or 15. I had been through a few years of intense stress and depression at that point (family/school problems), and I'd also just started restricting my diet too. I did a junk-food version of low carb when I was about 13, eating various processed low-carb products, many of which I believe contain isolated gluten (wheat protein minus the starch, to bump up protein content and reduce carbs presumably). Looking back, it was after this diet that my digestive problems really became noticeable. I went off low-carb but gained a newfound interest in healthy eating, cutting out all sugar, processed foods, dairy products, and meat (at least, I thought this was healthy at the time). I just seemed to feel worse. Eventually I was having mood swings, fatigue and bloating on a daily basis, so I knew something must be up.

A friend suggested I might have candida so I limited my diet further, cutting out all fruit, starchy vegetables, and later, gluten. I lost tons of weight and was thin for the first time in my life (aged 15). My periods also stopped. I went to doctors, but they weren't much help, making me feel hypochondriac and suggesting my diet was too limited (they were probably right about that). I remember them carrying out a blood test for celiac antibodies and it came back negative, but I don't think I was eating gluten at that point, except maybe in tiny amounts (I think I ate some oats back then, and Rice Dream which I didn't realise had barley). I never really got well either.

After a year or so, I got sick of the restricted diet and despite being thinner, I didn't feel healthier at all. I began to add foods back, and it was like a slippery slope. Soon I was bingeing on sweets, white bread, biscuits, LOTS of gluteny things and SUGAR. I was unstoppable. I probably gained about 50 pounds very, very fast. I was a real mess at that time too; it's not surprising, given that I was starving myself during the day and bingeing on non-foods at night. A few months after this began I managed to get my eating back under control and give up the junk foods and the awful bingeing, but by then I was suffering severe adrenal fatigue, not sleeping, absolutely unable to lose weight despite returning to my strict diet and I also thought I might have PCOS as I was growing facial hair (that scared the crap out of me).

Fast forward to today (I'm 20). Overall I'm healthier and stronger now, and I feel my hormone imbalances and sugar addiction are more under control. However, I'm still not functioning at my best. I suspect I might have low thyroid and/or adrenal issues (tho I've been tested for hypothyroid a few times and it always comes back "normal", grr!), I have bouts of depression/fatigue/just not feeling *right*, and I feel ill eating dairy, soya, gluten and pretty much all restaurant food. Since I've never been diagnosed celiac, I make excuses to eat gluten sometimes because I adore wholegrain rye breads and oatmeal - I even tried the gluten free oats last week - BUT I suffer immediately afterwards with horrible digestion, depression ranging from a mild feeling of anxiety to extreme despair/feeling mentally f'ed up, headaches, insane hunger pangs/urges to binge (I've binged on dry rolled oats before, ew), random foot cramping, fatigue, etc. I'm sure I'm forgetting something. Anyway, DO YOU THINK I MIGHT HAVE CELIAC???? And, is it worth getting a formal test? I'm not sure I could cope, judging by my gluten reactions. I'd be a total mess. Is it really worth getting an official diagnosis?

Thanks for your help

[nu-to-no-glu]

You'll probably get varied responses to your question about getting a formal diagnosis. Having been through the ringer trying to get one myself, I could suggest that you just cut out gluten and dairy for at least 2 weeks and see how you feel. From experience, it does take a little while for those "strange" symptoms to dissapear,but they do (I still have many, but not like I was...exhausted just to get up and take a shower-and now only 1 1/2 months into the gluten-free lifestyle). I have suffered from childhood like you,and now in my late 20s, it seems logical that it will take quite a while to undo the damage of so many years!

It sounds likely that you could have Celiac. If you do some research there is loads of info on thyroidand adrenal connections to the disease...and there are manyon here that believe they have yeast (candida) overgrowth as a result of undiagnosed celiac.

I think you could get a blood test, if you think it will help you stay on track, but loads of us have tested negative that still have the disease. So, it's not a definite. You should definitely poke around on the forums, I have learned loads from all of the helpful people here and I was like you, fed up, exhausted, and looking for answers! I found a lot of stories that I related. I usually think that our suspicions can lead us to the answers, sometimes it just makes sense! Welcome and good luck!

[DaisyJane]

Thanks for replying Nu. Believe me, I have already scoured these forums - they have proven very helpful indeed. Actually I am doing gluten & casein free now, and have been for a couple of weeks - or at least, what I THOUGHT was gluten-free/CF free. Since I had an obvious reaction to "gluten free" oats, I am having to go back to square one. I also think corn bothers me all of a sudden. I've been eating gluten free corn flakes and have had gluten-like symptoms such as brain fog, depression, constipation, feeling generally insane, and ravenous hunger leading to bingeing on the offending food. I feel I've been going round in circles for years with these food issues. GRRR! I think I'll do a strict diet of rice, fish and fruit for a couple of weeks. I'd do vegetables but they look repulsive to me right now.

I am feeling really fed up at the moment....