dani nero

I know it's a long shot since most of you live in the US or UK, but anyone know of (or knows someone who lives in Sweden who might know of) a good GI? :-)

Thanks Janet <3 :-)

I'll make sure to post here if I run into any more!

Thank you for this thread! Very helpful <3

but what's a GI? Can anyone explain all the associated abbreviations? I just found out I have celiac but I'm unfamiliar with all the shortened terms while reading through the posts :-)

Hello forum dwellers,

I've sadly not gotten any responses to my questions, but I know that the forum is large and it's hard to give every last poster your attention. I've luckily read around and found answers to most of my questions as well so no worries:-)

Nevertheless I'm still having stomach aches. I just never had them before, or maybe I just didn't notice them, or maybe they're just placebo.. I don't know, but I've been getting them often since getting off the gluten. The constipation is gone on it's own for the first time in my life but I don't know why I'm getting stomach aches. Like when I sit or lie down on it, it hurts. I didn't stop the lactose yet because I'm on trip in the middle east and the yogurt dishes or dishes that are eaten with yogurt are made really often. Could the lactose be causing the ache? My stools are kindof loose as well (sorry for the grossness). Will continuing to eat lactose prohibit my intestines from healing as well? I'm going home in a week.

I'm also wondering why getting diagnosed is very important.

Hi, it sounds like you have answered your own question - you do seem to have gluten sensitivity. Although you may not think your reactions to taking up gluten again may be strong enough to worry about, you are just 18, just a couple of years younger than I was when I first had similar problems to you. I am now 47, and not having the ability to search and share information with other suffers like you do when I was your age, I din't pay much attention to it and went back to eating gluten. I wish I hadn't as it would have saved me a lot of pain and poor health, and trouble for my family. I have just posted my story for a similar question in the next thread down from this one, if you wish to look. My early menopause reversed once I went gluten free, and I also tested negative to the celiac antibodies.

As you have insurance, it might have been better to seek a biopsy before you tried going gluten free. Unless you go back on gluten for a good few months, if you have a biopsy now, and it is negative, you won't know if your gluten free experiment interfered with the result or not.

I would suggest you consider either gluten challenge and biopsy, or go straight for a strict gluten free lifestyle. It is not worth risking your health for bread and cake. Your doctor might not agree with this advice, as many seem to think that a gluten free diet is unhealthy, or too difficult. Well it might be if all you eat is gluten substitutes, rather than just eating home-cooked naturally gluten free meals.

If things don't fully resolve within a few months of being on the diet, or if you feel worse, then bear in mind there may be other problems too which may need medical investigation.

I hope you work out what is best for you.

UKGail and Oats I'm so happy to hear your periods came back. I'm 33 and I just went gluten-free myself after 20 years of amenorrhea.

Great post and responses. Helps a lot for those of us with silent celiac. I myself am undiagnosed but I've always suffered from anxiety, amenorrhea, constipation, and now I'm starting to get rashes. I also have wondered if any damage is being done if accidentally glutened.

I've been reading some other posts and some new questioned have come up! I would appreciate your input and advice.

Can Dermatitis Herpetiformis appear on a single finger? I was getting a rash where the skin broke and got flaky together with tiny blisters. It both itched and burns (specially at night). I went to a doctor and he told me it was allergies from dish soap, and gave me cortisone cream for it. The rash went away when I started using gloves when washing dishes, and the cream was quite effective if it showed up again. This rash only appears on my right middle finger and the back of my left hand but milder. A few weeks ago I got a red flaky patch on the bikini line as well but it didn't have blisters. It was very itchy and a little inflamed though. They've both gone now that I've gotten off gluten 100%. I'm starting to think it might be a mistake not to get myself diagnosed now.

I'm trying to figure out which one of my parents has celiac, even though they're not taking me seriously. My mother is very short and skinny, can suffer from constipation, and has a red rash patch (small and flaky but no blisters) on both her knees. She doesn't have diabetes and I don't know about her thyroid.

My dad on the other hand has diabetes, thyroid problems, constipation, and suffers severe mood swings like me (I used to think he was bipolar because he'd be calm for months then become overactive and irritable the next months). But he's quite tall and his bone structure is wide. Is it possible that both my parents have celiac?

It absolutely amazes me that my mom got diagnosed with this at the age of 2 (which was 49 years ago). It was one of the first things they tested for. 49 years ago, and it still isn't too well known among doctors.

The new generation of doctors are too busy watching MTV.

Just to address the chewing gum and ketchup issue. I don't chew gum but I haven't heard of any with gluten. I would think sugar free gum would be OK. In the US, i haven't seen any ketchup with gluten.

Have you had yourself tested for anemia, iron, ferritin, B12, calcium, magnesium, vitamin D? Severe vitamin deficiencies are a result of the intestinal damage. You can't absorb the nutrients.

I assume through all this they are watching your thyroid?

Not every pain or problem is related directly or indirectly to gluten. Your back might just hurt because you lifted something wrong. Alot of things, like bad fingernails, can be related to the vitamin deficiencies caused by celiac. They can also be related to thyroid, dry air, etc.

Make sure you are not deficient and supplement what you are lacking.

Thanks kareng. I'll get myself tested when I get back to Sweden. I'm currently on a trip in the middle-east. The chewing-gum and ketchup are local brands. The gum contained dexterin and the ketchup some type of flavoring. I did a thyroid check a few years ago because I was gaining unexplained weight (which turned out to be due the anti-depressant paroxatin). They said my thyroid was not under-active.. but I'm not sure if that has anything to do with celiac disease symptoms.

Hello everyone,

I've had amenorrhea (absence of menstrual cycles) since I was 12, and I've been taking birth-control pills to regulate my periods since 16, as the doctor's conclusion was that I had a hormonal imbalance. I'm 33 now.

I've always been constipated (sometimes diarrhea but not as often as constipation) and always overweight, even as a little child. I never had any abdominal problems other than the constipation and bloating, but I never felt any pain.

I went to doctors so many times complaining about being depressed, suffered severe mood-swings & anxiety, tired and constipated, and I even told them that I ate healthy and exercised, but they always smirked at me and linked my problems to my weight. They told me that nothing was wrong with me, to go home and start eating vegetables and cut down on pasta. A gynecologist even told me that there was no need for me to get periods at all, so even the birth-control treatment was needless!

I started reading a lot about hormonal conditions because I wasn't satisfied with the treatments I got from doctors, and I falsely came to the conclusion that I had PMDD (advanced state of PMS), so I went to yet another gynecologist and explained all my issues to him. All he did was prescribe a different type of birth-control pill and gave me anti-depressants, which only made things worse.

I however read on a PMDD website that a good natural treatment for PMDD was to cut gluten, sugar, lactose, salt, caffeine and salt from my diet, so I did that. That's when I started feeling better, but still not all the time (since I had no clue I had to be 100% strict! I still ate processed foods and ready-made sauces which I had no clue contained gluten).

As I was visiting family this summer, they all tried talking me out of gluten-free eating because they felt bad that I couldn't enjoy all that food they were eating. They told me it was all bulls$#& and silly because no doctor actually told me to stop eating gluten. I was almost convinced since I wasn't really feeling so good anyway, but I went online a see if any websites confirmed it was all a myth.

That's when I found that amenorrhea is a symptom of celiac disease. I always thought that my digestive issues were caused by my hormonal imbalance, and not the other way around. I dismissed celiac disease before because the doctors told me I had a hormonal imbalance. I didn't know doctors could be so stupid.

I also discovered that my gluten-free diet wasn't effective while reading about celiac disease. I had no clue I was still eating so much "hidden" gluten.

Discovering I might have celiac disease made so much sense, because whenever I exercised, I would feel weaker after.. and people are supposed to feel stronger after working out, but I would have such awful muscle weakness (not pain) that pushing on the bicycle paddle was harder than the previous day, until it would be too difficult, so I'd stop working out until the next week (where my strength would be back). It also made sense because I don't have hair or acne on my face or any faulty reproductive features which could be caused by hormonal problems.

Now I'm watching every last ingredient if I buy any ready-made good or sauce, and I even try to avoid anything in a jar or a can. I'm sticking to only fresh stuff and keeping check on all the hidden gluten in flavorings and whatever. Even my weight has been going down, but I have a few questions that I'm hoping you guys can help me with, since there is no way I'm going to a god-forsaken doctor anymore.

1. How do I know what kind of supplements I need? My teeth are slightly transparent and decayed but I don't have any serious bone or dental problems. My nails tend to bend even when they're short.

2. I sometimes get dandruff and itchy scalp. Will this be treated by dieting? I'm currently using VICHY shampoo which I hope is gluten-free (they're not answering my emails).

3. Since I don't get any immediate symptoms (like cramps or sore throat) after eating gluten, how do I know I've made a mistake before it's too late? All I feel is constipation, bloating and anxiety.

Thank you anyone who reads this. I appreciate any help and pointers, specially since I don't know anyone else who knows about this. My entire family cares less about ingesting gluten even though I've told them it's hereditary. Not a single doctor I've met ever thought twice about helping me since to them being overweight pretty much sums it all up for them. My weight has been going down on it's and I pretty much eat the same amounts as I always have.