carsondcat

It's called an iceberg because no-one knows how many undiagnosed Celiacs there are.

Celiacs is on the rise because as more people become aware of it, more people are getting themselves tested for it, because the symptoms of Celiac Disease hits a chord with them.

1% of over 308,000,000 people is still a lot of people (in the US alone).

When I was first diagnosed with celiac disease (9 years ago) , 1 in 250 people had celiac disease where I lived. That is now down to 1 in 130 people and in the specific area I live it's actually 1 in 100 people, and that is because the local teaching Hospital has taken and interest in Celiacs Disease and are carrying out some major and interesting studies (this in a total population of 4,000,000).

Both my children have had negative blood studies and although I have told them that there a false negatives because they are now both adults both are refusing to get retested, both have problems when eating certain foods but just chose to ignore the fact that they could have celiac disease. One is overweight and the other skinny deathly pale and has many other allergy related problems, both are short in stature as I am. But what can you do...

They must be going for the 2009 "Betcha thought you'd never get glutened from THIS Award."

that sounds like a good subject for a new thread!

I find it fascinating how many new people come to this website, post something negative in tone, get a negative backlash (this particular one was admittedly over the top), and then complain about being made to feel unwelcome. I feel a need to frequent more message boards to see if this is a Celiac board thing or an internet thing.....

That might be because Newbys feel overwhelmed by what's going on in their lives.... I wasn't daunted when DX 9 years ago just relieved that i had an answer for 38 years of ill health. i wasn't angry and cry why me, even now people still think I'm missing out but I never have because i would rather not go back to the poor wretched creature I was, and if all it takes is a change in eating habits then so be it.... But people do need to vent their frustrations once in a while and where better to do it than a forum where we've all been there and done that and wear the T-shirt rather proudly (from CafePress)

Why would I make a terrible spouse? Is it because we've removed the products containing gluten from our house? Is it because I do the legwork to find restaurants that she can eat at? Or, maybe, it's because I spent the time composing a large email with links to inform her and my family of the situation.

What shortcomings do I have? I said I was initially resistant, but quickly realized the benefit. I don't have any anger over the situation we are in. It isn't ideal, but that's life.

I guess it's unfortunate you all have such crappy friends and family, but don't go telling me I'm going to make a terrible husband.

This site seems to be helpful for a lot of people, but you have done an excellent job of making me feel unwelcome. Thank you for that.

I either just eat salad bring a gluten-free plate that everyone including myself can eat, or just bring my own to eat seperately. All i need to know first is wether i can eat somewhere or not. It's not a big deal and the people who usually have problems with it are the people either newly diagnosed where it seems overwhelming, or where it's their nature to be just plain plain pig headed. If I'm somewhere where someone is smoking I move away, but in my home they would be asked to go outside to smoke as i am a non-smoker. Boss in my domain but no-where else! Try not be offended by what others write we're all individuals and as such can have our own opinions. Don't be put off, this is a good site and you will get lots of good information and support here... Unless I'm having a bad day

I have splits from the nail tip to the bed of the nail and then the ridges.

I don't recall anything like that but my nails go from bendy soft, to brittle hard where they split across the nail but never vertically. Do you ever get infections under your nails? I'm curious now, i know we are all individuals and everyone reacts differently but the more i read the more i find out that what I thought was normal, because I've had it all my life, is in fact not how it's supposed to be... I've never tested further for anything else as I always imagined that once i was diagnosed it would all be better. I expect I need to rethink this as i had to have a hysterectomy this year due to constant low iron and haemoglobin levels. I haven't tested my levels since as the Dr reckons 12 months to 2 years to get back to normal levels. Now I'm wondering if that was wrong and that I should in fact not wait and see at all.. oh well just ruminating things over in my mind now...

Funny, I now have moons on my thumb and next two fingers but not the rest. It's nice to have any moons! I'll have to check my dd when she comes over later today.

For goodness sake, see, I've been diagnosed with celiac disease for getting on for 9 years now and strictly gluten-free as well I've only ever had 1 moon on my left thumb, just looked and it's still there all on it's own (ata boy) I've always had vertical ridges in my nails also, so yet another thing i thought was normal isn't.... Go figure...

I am hoping this is celiac symptom...anyone have experience with this? or with anything else that results in left groin pain?

Groin pain, pulled muscle? where abouts in the groin? do you mean a lump..hernia? or is it a referred pain from somewhere else... could be anything .. can you be more specific? if it worsens or doesn't go away my best advice is go see a Dr...

it could be, but what else are you snacking on? if you're sure it was at the Hotel let them now and they can review what they did and make sure it doesn't happen again, as a matter of course i won't eat anything where anyone is unsure of the ingredients, just to be on the safe side... good luck with tracking things down... alternatively you could have picked up a virus from somewhere thats made you ill.. we musn't get so hung up about the food and ignore all other things that could be making us ill

I agree that with stubborn people who don't believe in such things as Celiac Disease and think the gluten-free is just the latest food fad going round, you won't be able to explain what you require. So eat before you go and take snacks with you to be on the safe side.

That said i would be pretty peeved with my other half if he ever thought that my celiac disease was causing trouble for someone else after all you're the one that has the trouble not them... You need his support not his criticism.. Even my supportive Hubby got slightly agitated the other day at his friends house because they had prepared me a lovely salad and chicken they had even thought about asking me to dish up first me to so i wouldn't get anything in it, but i couldn't make my self eat the chicken because it had been grilled and i wasn't sure about CC issues and the grill and i ended up eating just the salad which I was happy with and had no issues over. I had to refuse the dessert of baked apple and ice-cream because of the pans i saw the apples baked in and the ice-cream was cc with apple pie crust, so even with the best intentions of others you still have to be vigilant and risk upsetting people to stay healthy, It often can't be helped. Diagnosed with celiac disease for 9 years now and still taking my own food with me.

And I thought it was related to the beetroot plant shows you that I'm no baker, but I do learn something new every day in this forum.

Sorry but first loaf second attempt can't help with your question, but I thought I'd give you a pat on the back for sticking with it.

After almost 40 years of undiagnosed Celiac Disease and 9 years post diagnosis, i have never wanted to try eating Gluten again... why would I? Can't think of even one good reason, no not at all.

I know my personal symptoms of: Gas (very frequent and very unique scent),

Lols, on the unique scent.. me too smells like something has crawled inside me and died (falls off chair with laughter, my poor husband...) I have lots of different symptoms, including pain in various parts of my stomach and intestines and red welts and blotches on my tongue, brain fog, tingling in the arms and hands, debilitating headaches not to mention feeling as if I'm about to explode.... As always great advice from ravenwoodglass

I now have formed BM's unless i make a mistake then I don't... 4 months is still early days yet it can take a while for things to heal.. i can't eat oats even gluten-free ones, and I'm sure others will come back with what they react to as well... I've had celiac disease since early childhood but only diagnosed for the last almost 9 years now, and I'm still making mistakes usually only when i relax my vigilence.... such as not seeing which free flow agent they use in salt/spice... I use sea salt in a grinder now and the same for pepper (pepper corns in a grinder).. At my age i also have to take a magnifying glass shopping Good Luck and keep going...

Please help guys, I need some ideas for healthy gluten free lunches. Healthy but filling....A salad for me is not filling!

Im used to having cheese and tomato on gluten-free toast or left over gluten-free pizza but I need to lose weight! Im the heaviest ive ever been and for some wierd reason ive gained 10Kg in the last year!! Ive had lost of tests done and all the only thing the doctors found was a blood clot near my left ovary which was probably a cyst.

Ive been gluten free since May 2008.

I feel uncomfortable in my skin, I feel self concious and un-sexy. My weight gain is effecting my sexual relationship with my partner....I dont want him to see me naked, I feel so big at the moment - how can he possibly find me sexy?!

Please help - suggestions on how to improve my diet would be really appreciated!

Thanks so much!

Erin

(wilem)

p.s I dont binge drink, smoke, snack on fatty cakes/biscuits etc. I feel like I eat fairly well already!

Also - I should add: Im in Australia and its coming into summer....I live in the desert and its already SUPER hot here! I guess i need lunch ideas that a 'summer friendly' eg. Not hot soup. Also, i dont get a long lunch break so I need meals that are quick and easy to prepare.

Thanks! :-)

Gooday

Give up the gluten-free pizza, cheese and gluten-free bread which is much higher in carbs and fat than non gluten-free types (if you really want to lose weight). if you still want to eat cheese you have to do low fat cheese such as cottage cheese (yeuch) or non-fat ricotta cheese... and you really must limit the carbs you take in with the rice and gluten-free pasta, as already mentioned portion control is everything... with rice and pasta 2/3 of a cup of cooked rice or pasta is one portion ...if you eat yogurt it should be either low fat or non-fat (fage) . Instead of eating gluten-free bread i eat either the rice thins or corn thins as you can have 3 of these compared to just 1 slice of gluten-free bread (roughly) so you get to eat more for less calories. Hummus is great as a dip for raw vegetables especially when snacking.

You say it's hot but you don't want salad how about chicken and vegetable stir fry it's quick and easy to prep and cook.

I've just a 2/3 cup of cooked gluten-free pasta with an 8 vegetable sauce (i make a batch of the sauce and freeze into 1 cup servings) with one chicken sausage link and now for pudd I'm going to have a nonfat yogurt with half a cup of apple sauce mixed in with 4 chopped up walnut halves sprinkled on top and I'll struggle to eat all of that.. I'm training (exercising) whilst under the guidance of a nutrionist.. so my big advice to you is diet the correct way under the guidance of a professional it make cost you a little bit in the short term but the long term gains will be worth it.. It will also keep you honest and motivated

Kia Ora and Good Luck

P.S My husband has lost 21lbs in the last 8 weeks and wow is all i can say....

It's an interesting theory, my gums started receeding in my 20's (celiac disease for 47 years) what's maybe even more so is that for me is that the first reaction i get to gluten is my tongue, it starts to feel swollen and comes up with red itchy blotches and circles, and thats when i put it in my mouth it's almost instantaneous for me and thats when I know for sure that I've been glutened.... I used to have a lot of mouth ulcers when i was a child/teenager and i know that's been the topic of studies recently...

That's what i call keeping it real, even though i have been gluten-free nine years I still compare the taste of what I remember food tasted like to what gluten-free food tastes like I don't even bother to bake gluten-free anything as I'm so disappointed I just eat fresh prepared myself unprocessed foods... Thats not to say i haven't tried gluten-free, I have, and when I say to my DH I don't like the taste of this he says "tastes good to me" so then i have to say well you eat it every day for the rest of your life (as I do get a tiny bit annoyed with him when he says that even when I know it's truly inedible and not a matter of like or dislike)... But on very rare ocassions I have eaten a processed gluten-free food and it has tasted soooo good it's made me cry tears of pleasure, now that's what I expect gluten-free foods to taste like a taste of heaven on my tongue.....

Ugh I know. I have had SO many doctors blame my maladies on "my cycle". Um... no. I used to have migraines for weeks at a time - with no pattern whatsoever. If it was related to my cycle, don't you think it would have a pattern?? Like maybe a 28 day pattern?!

I get frustrated just thinking about it!

Just remembering the "migraines" where no medication would make it better and they would be endless in their duration... Haven't had a "migraine" since being gluten-free. I'm very thankful for that

I agree with what the others are saying... plus high doses of Iron can give you either constipation and or diarhea, definately get that pain in the RUQ checked out.. you haven't mentioned your haemoglobin levels.. get those checked too. The malabsorption issues are a real pain and how much damage you have sustained from eating gluten has a determination on how quickly you heal. When i was first diagnosed i was put on a cousre of Iron injections IM (sore and discoloured backside for a while) but worth it. Malabsorption of Iron has been a huge issue for me and I have peaks and troughs but basically I've had to take oral iron ever since.. Don't even need to get tested now I know by how I look and how tired I am that I'm low on Iron again. Yes it does have a tendency to grind you down..

Do you really know the risks of going back on gluten I wonder... My (undiagnosed) until her death Nan died fron Bowel Cancer, it's certainly not a risk I'm prepared to take. Despite the ups and downs I'm Gluten Free for life. For me Gluten just isn't a risk worth taking.

If you're sure it's not your food, drink or new medication then you need to see a Doctor........

So this is my first topic and my first post.

I suffer from IBS so I have decided to try going Gulten Free because a friend told me that a wheat allergy or Celiac can be misdiagnosed as IBS. So I am on a Gulten Free diet to see if it improves my IBS, but I have ran into another problem, my urination habits have changed. Now I am only on my forth day, but I seem to be peeing tons more often beginning half way through the second day. I have been tested for diabetes and thyroid and that is not the case. So is the peeing alot a symptom of the detoxing?

Hi ... frequency of urination could be symptomatic of the start of a UTI, is your urine cloudy or smelly (if so get tested for a UTI) or are you just drinking more, i can't remember if my urinary habits changed after going gluten-free as it was 8 years ago and I have the notorious Celiac memory. But I'm sure others here will be able to help you more.....Also certain vegetables are a diuretic....

To anyone that can shed a light on my situation please do.

I was first diagnosed with having the H. Pylori bacteria and was medicated for that to get rid of the bacteria.

I can't answer your questions but (i expect others here can) 25 years ago (took 39 years for a Celiac Diagnosis) I was diagnosed with having the H. Pylori bacteria through a positive blood test and i was treated for it with medication... My symptoms remained after finishing the course of medication and the DR told me i would still experience pain after eating certain foods due to scarring left by the ulcer. When all those years later i had an endoscopy and biopsy for the Celiac diagnosis the GI told me that I had never had an ulcer as it would have been visible via the scope (scarring).. Basically i ignored the tremendous amount of pain i was in because of what the DR said and because of the diagnosis so did the DRs EVERYTIME i went back to see them. In my situation, the H.Pylori bacteria (through a blood test) was one of my misdiagnosis, that was my Celiacs, popping it's head up yet again for the Drs to notice, if only they had diagnosed me then i probably wouldn't have all the other health issues i have now......

I was undiagnosed and underweight with anaemia and low Hb i ended up having to have a hysterectomy last year!! so no i don't think my anaemia was dealt with....

Thank you for your reply. I definitely know my body better than my doc, but they brush me off as a hypochondriac. I'm always sick & now that I think it was the gluten, I'm going to stop eating it. Unfortunately for all this time, the 6 years I've been having issues, they've been telling me I have a virus on & off & think I'm nuts. I'm going to a new PCP starting in February, so hopefully I will have some luck w/this one.

I first started being ill aged 18 months, after having a bout of pnuemonia, failure to thrive and all that goes with it such as delayed puberty followed, I remember always being starving hungry and when the TOM started things went from bad to worse i was at the Drs every few months and they would put me on iron supplements and tell me to go away, 10 years later i had the diagnosis of Hypochondriac, I was not diagnosed until 2001, which was 38 years after i first showed the signs of Celiac Disease (upon reading i had all the "classic" signs and symptoms). I thought my "D" was normal what would i know... the first time i passed a fully formed motion it was pure agony, i felt it going around the ascending and descending colon, I cried with the pain of it, to be graphic i could even see it moving around my abdomen, it remained extremely painful to go to toilet for quite a while. I have been strictly gluten-free since my blood tests and biopsy in 2001, and i still have trouble keeping weight on and I'm still very small. I still struggle with anemia and low haemaglobin. I have brain fog a lot..

Please keep on, keeping on, i hope you find a health professional that will really listen to what you're saying, because at my worst the pain would be so bad the sweat would roll off me and it would have me curled up in the fetal positioning trying to rock the pain away in tears of agony, it hurt after everything i ate and everything i drank even if it was a glass of water. Don't allow yourself to get as bad as that 6 years is far too long already...

It's toooooo gross even to think about imagining the hook worm wriggling and jiggling inside of you, there was an old lady who swallowed a fly, i don't know why whe swallowed a fly, perhaps she'll die....... I think I'll just remain gluten free, thanks but no thanks...