Please Reassure Me!

[Bell]

I have recently had a positive antibody test for celiac, and have been about a week gluten free. It wasn't too hard for me as i had suspected it myself during a particuarly bad phase about 7 years back, cut out gluten (for a year!) and all my symptoms improved so much that I was able to eat it again, in small quantities...or so I thought....

It wasn't obviously connected at the time, but as I began to get a little blase about staying gluten free, some odd symptoms popped up. First, I had always had very irregular periods (and sometimes up to 2 weeks in length when I finally did get them!), but they began to get less and less regular. Now I've not had one at all for 2 years almost exactly. I've had the tests and scans to check for PCOS and thank goodness they came back clear. Could there be a connection with celiac?

I've also lost a bit of weight, although it has been partially intentional. Sometimes I feel an awful tension in my stomach after meals, and find smaller ones far easier to cope with. So I had been consciously restricting the amount I ate. Some of my friends thought I had an eating disorder, which I suppose isn't so far off the mark! I can see how the two could be connected. Also, and I find this hard to write, sometimes the tension in my stomach gets so bad I have to throw up. It's not like full-blown bulimia in that sometimes there is nothing really to throw up, but getting something up seems to help. Does this make sense? It's not very often, but it does disturb me obviously. Since going gluten free, I have been aware that the tension has not been as bad at all, but I think I acccidentally got glutened (nibbled some hundreds and thousands while playing with a child) and have felt the awful tightness ever since. It's unbearable!

My doctor didn't want to test me for celiac because he said he'd never met a sufferer who didn't have blue eyes and anaemia. Mine are green and my iron levels are very healthy. Eventually I saw a locum who sent me for masses of tests. Has anyone else heard the blue eyed thing? it sounds a little bit unlikely to me. He also thought it was possible I only had tropical sprue since my symptoms started after a trip to South America. Could this be true? or could it be that it triggered something that was always there? I think I've always had a problem, because I've always had GI trouble, dermatitis, and my periods have always been fairly irregular.

Sorry for the long post, and all the questions, but I guess I'm looking for reassurance that my other symptoms are maybe related to celiac. I want them to be, so I can finally do something about it! Another thing - I've had chronic cattharh ever since going gluten-free. Horrible, constant throat clearing and swallowing etc.

Thank you everyone, and please reply!

[darlindeb25]

My doctor didn't want to test me for celiac because he said he'd never met a sufferer who didn't have blue eyes and anaemia.

Now that is just ridiculous! Your doctor needs to study up on celiac, or you need to find a new doctor. Celiac does not care what color your hair is, or your eyes, or if you have anemia/weight problem, doesn't seem to care where you live, or who your ancestors are. I have very dark brown eyes, and many of my celiac friends have brown eyes. I also was only anemic once, 27 yrs ago, when I was pregnant with one of my kids. I was my heaviest ever when I went gluten free.

Isn't your positive test enough proof for you?

[ShayFL]

Oh Geez....your Doc. might just win the award for complete ignoramus. I thought I'd heard it all.

Please get a new doctor. Your life can depend on it!

[JNBunnie1]

Oh Geez....your Doc. might just win the award for complete ignoramus. I thought I'd heard it all.

Please get a new doctor. Your life can depend on it!

You have to be a blue-eyed anemic to have Celiac? There are so many things wrong with this statement I don't know where to begin. Here's one idea though: YOUR DOCTOR HAS HAD A LOBOTOMY.

[YoloGx]

I agree, your doc. is being outrageous. While its true 30%of Nordics have the potential to get celiac , so do Italians. And overall 10% of people of European descent have the gene potential for celiac.

For myself I have hazel eyes and got celiac at age 4 months when I "failed to thrive"... My docs were in denial at age 4 on (since by then I could grow while on gluten despite then getting sick all the time and being out of it etc.)...

Bea

[Bell]

Thanks everyone!

I did wonder ... they assigned me this doctor at the surgery especially because he was supposed to be the specialist in this area in comparison to the other docs. It did sound rather ridiculous at the time, but he is one of those fatherly, handsome and charmingly comforting sorts that seem to be utterly convincing in everything they say, rather as if I was a little girl. Perhaps he's learned that it works!

Anyway I feel better now. I must ask though - I got a letter today from the local hospital, which I'd been referred to, and they have asked me to visit in 2 months time (this is the NHS!) with a urine sample. What kind of test would this be? if it was a biopsy (which I was expecting) wouldn't they tell me? I've already had an antibody one - maybe something else? I've already cut out gluten and feel much better, though detox-y and sensitive, but if I continue to be gluten free, is there a possibility that I'll give a negative result for whatever test this is?

thanks again folks. I am so happy to have found this place. I don't feel like an over sensitive hypochondriac weirdo anymore!

Bell

[mamaw]

Hello

Wow, I wonder how your doctor came up with that one>>>> maybe he can twitch his nose & make celiac disappear! No wonder the US is so far behind other countries regarding celiac.

I think it is us who have to teach doctors , they are not teaching us anything....

I do have to laugh a bit about his comment because I'm blue eyed & had anemia at one point.

But so are other family members & they have tested negative for celiac.

mamaw

[photobabe42]

A few thoughts on doctors...

When I was diagnosed with Crohn's Disease at 19, it was the fourth doctor I saw who finally picked up on it. The first three didn't see past the bacterial infection that apparently kicked it off (pretty common for celiac disease to flare up the first time after or with a bacterial infection).

This year I came down with a CMV infection which is sort of like mono, and it again took multiple docs. It was actually an intern at my regular doctor's office who brought up the idea to test me for that since it's fairly rare BUT not impossible especially since I have a suppressed immune system. The CMV was also masked by a sinus infection and my Crohn's flared up due to the antibiotics. There were a lot of things going on!

Some doctors treat the symptoms, some search for the REAL problem. Some go with the "odds" and some enjoy the challenge of solving a medical mystery. Most docs will start looking at what is most probable, the good ones will continue to dig deeper until you get the results you deserve. After moving to a new city, I still commute a half hour to see my awesome gastroentrologist. Medicine is a business and you can go elsewhere if you aren't satisfied.

Squeaky wheel gets the grease and all that. Best of luck.

[jsb727]

Not sure what the urine sample would be for. I've never had to do that for anything regarding Celiac. I just had the blood test and upper endoscopy/biopsy. I'll have to go in next spring/summer to get a second endoscopy so they can make sure I'm healing.

I have brown hair and brown eyes, and I'm positive for celiac. So I know it's not just blue-eyed people. Unfortunately for me. After years of seeing various doctors, I finally found a naturopath who was the one who told me I should be tested for it. But, even my naturopath seems to not know all the facts about celiac. She said to avoid it as though it's a toxin, which I agreed with. But when I was asking her how careful I needed to be, she said if someone sliced off a piece of bread with a knife, I could just wipe the knife off with a towel and then be able to use it. From other people's posts on this site, that does not appear to be a wise idea. Is everyone different?

Can people with celiac be more or less sensitive than others with celiac? Or is everyone the same? I mean, I know everyone has different symptoms, but can some people handle more gluten before it does damage to their body? This is becoming the most challenging party of celiac for me... trying to figure out exactly how careful I need to be. I know I've only been gluten-free for 5 months, but it's hard to figure this stuff out when I don't get any of those gastro reactions others have. Does anybody else not have noticable reactions when they eat gluten? How can you tell when you eat gluten?

[darlindeb25]

Can people with celiac be more or less sensitive than others with celiac? Or is everyone the same? I mean, I know everyone has different symptoms, but can some people handle more gluten before it does damage to their body?

Yes, some people are much more sensitive than others, but, that fact does not mean that one person will have more damage than the other. Two celiac's can both eat the same thing containing gluten, one may have an immediate reaction, and the other may not react for hours, some do not even know they have been glutened. Yet, they probably both will have the same damage.

This is becoming the most challenging party of celiac for me... trying to figure out exactly how careful I need to be.

You need to be totally gluten free. Not just a little bit...it's like being pregnant, you are not a little bit pregnant, you are or you aren't. You can't eat gluten, and you will have to always read labels, and try to make sure you do not eat gluten. 1/8th of a teaspoon of flour will make us sick, that's next to no gluten.

[YoloGx]

A friend took my gluten-free Thai rice dish out of my truck that I had prepared myself for a group event and then helped himself--using a clean plastic fork since he knows I have celiac and was "doing his best". I immediately put my large metal spoon in the dish and helped myself before anyone else had a chance at it, but it was already too late and I got D for 24 hours... I think that's what you call sensitive... Its an auto immune response to "protect" us from the offending agent. Just a microcosmic amount is enough to send my auto immune system into action unfortunately, and I think that is true for a lot of us here.

Bea

[Bell]

Yes, some people are much more sensitive than others, but, that fact does not mean that one person will have more damage than the other. Two celiac's can both eat the same thing containing gluten, one may have an immediate reaction, and the other may not react for hours, some do not even know they have been glutened. Yet, they probably both will have the same damage.

This is a worry for me too, and probably many others. If our reaction to the gluten is delayed, hidden, or comes out in an apparently unrelated way, it's really hard to keep track of how sensitive we really are. I've only just begun to notice that I do have fairly immediate physical responses, but it's not always D. Usually it's the stomach tension, which then makes me FEEL tense. Often I'll have a horrid little argument with someone, or just feel impatient, restless and irritable, and only later when I make myself sit still and think about it, realise that it's because my stomach feels as tight as a drum, and I am reacting out of a feeling of sourness both physically and emotionally. I think it would be best to try and avoid gluten as completely as possible, but even then, it's difficult because you feel self conscious about it, especially with those who are less informed. I don't want it to become the center of every discussion I have (and my partner would surely get very bored with the same questions etc too).

It's so hard though ... how could I have guessed that hundreds and thousands have gluten in? they are just little sugar strands on cakes and 'jazzies'. Why did they go and do that?

[YoloGx]

This is a worry for me too, and probably many others. If our reaction to the gluten is delayed, hidden, or comes out in an apparently unrelated way, it's really hard to keep track of how sensitive we really are. I've only just begun to notice that I do have fairly immediate physical responses, but it's not always D. Usually it's the stomach tension, which then makes me FEEL tense. Often I'll have a horrid little argument with someone, or just feel impatient, restless and irritable, and only later when I make myself sit still and think about it, realise that it's because my stomach feels as tight as a drum, and I am reacting out of a feeling of sourness both physically and emotionally. I think it would be best to try and avoid gluten as completely as possible, but even then, it's difficult because you feel self conscious about it, especially with those who are less informed. I don't want it to become the center of every discussion I have (and my partner would surely get very bored with the same questions etc too).

It's so hard though ... how could I have guessed that hundreds and thousands have gluten in? they are just little sugar strands on cakes and 'jazzies'. Why did they go and do that?

Last spring after I discovered how sensitive I am and had gotten so very ill with a bacterial infection as a result of several episodes of CC, I used to talk about it all the time. Now I just state the facts if I have to and always bring some food along to wherever I go in my little lunchbox or in my purse. Sometimes it cracks me up if I have to mention I am afraid I will get "cross contaminated" from a potential boyfriend if he chooses to eat a cupcake--though soon he realizes that then I won't let him kiss me, which motivates him to take more interest. Kind of reinvents the situation, which isn't all bad... It can be kind of playful actually. Available but not. Sometimes taking one's time is better. Similarly I don't make as much a fuss with my family while keeping strict boundaries in this regard. Now its becoming just how I do it. I don't have a dog in making everyone so aware as I did at first. If they are curious they can ask.

Meanwhile I just bought some new jeans. I was a size 12 a year ago and now am a size 8 even though I still eat the same amount. I also am not getting the usual fall colds and flu even though I do get the occasional headache from some hidden gluten here and there. I face the situation of having a lot more time to do things with my life rather than be ill all the time. Even with the occasional slight CC its not as bad by far as it used to be. There are perks in spite of some drawbacks after all...

[Bell]

Are bacterial infections connected? I have had reoccurring BV infections recently.

I'm so fed up. D this morning, but I don't know why. So frustrated, and feel nauseous, brain-foggy and shivery too. I had jacket potatoes, baked beans, cottage cheese last night. Maybe I'm intolerant of something else too. The beans had "modified maize starch" in, could that be a problem?

thanks all,

Bell

[YoloGx]

Are bacterial infections connected? I have had reoccurring BV infections recently.

I'm so fed up. D this morning, but I don't know why. So frustrated, and feel nauseous, brain-foggy and shivery too. I had jacket potatoes, baked beans, cottage cheese last night. Maybe I'm intolerant of something else too. The beans had "modified maize starch" in, could that be a problem?

thanks all,

Bell

It could be. Corn often is CC in the silo etc. Potatoes too for some are suspect. I found recently my eczema was due to potatoes, tomatoes and peppers--seems its not that uncommon for people with celiac. It was driving me nuts; am so glad I now know to avoid them...

Bea

[JNBunnie1]

Squeaky wheel gets the grease and all that. Best of luck.

See, this has always worried me, because I'm afraid if I squeak too much, I'll get replaced!