Devastated! Everything's Fine With Me?

[Guest nini]

I've heard from quite a few of the "experts" that some Celiacs react to the protein Avenin in Oats just like gluten. So while they may be gluten-free, you may be reacting to the Avenin in them. I don't eat Oats at all because if I do I get bloated and severe indigestion (it really burns).

[sonja69]

thanx nini!

I am eating oats (pure, labeled as glutenfree) almost every day, on good and bad days. and I am not bloated directly hours after. no real problems with them on bad days.

but I can try this, though I love them.

oddly enough when I have good days, I ate mostly 'bad' food, more fatty, fastfood, no veggies, sweets.

It's really confusing...

I really have a problem with the biopsy, it will still be negative, I think the dr is kind of biased and will influence the result. Do not know if they really have specialists...

I think the dr took 2 from each 'end', since he went trough the colon to the 'door' to the small intestine (I felt it since there is my appendix surgery scar and saw it on the screen).

the dr wasn't really excited about all either. I had some cramps during colonoscopy which I think is normal, and he gave me pills for cramps although I never have some, and he thinks that will be the problem. haha

I think I am going to university again, studying medicine and become my own dr.

best wishes,

Sonja

[Guest nini]

the dietician/chiropractor (yes he's both) that I work with recommends that everyone keep a very detailed food journal for at least a week to help pinpoint any potential problems. Certain things may not affect you immediately. It may not all be gluten related, that may only be part of the puzzle (he and I both believe gluten is bad for everyone regardless of Celiac or not)...

I didn't want to give up oats either as I really love the, but I've found Barkat's Porridge that works great for those oatmeal cravings. (it's available on the Celiac.com store site)

[dennymel]

Sonja, don't give up. Try the gluten-free diet and see if you notice any difference. If you feel better, you have your answer and you don't need any medical test to tell you that you feel better off gluten.

I felt better removing gluten, but all my tests came out negative. I did not heal completely, so I kept looking. The most recent test I asked my doc to do was for Lyme Disease. She told me I didn't have it, but if I felt better ruling it out, she'd do the test. I even ordered the test myself from the lab! Guess what?! I've got Lyme Disease! I do have gluten intolerance, but it's likely a sensitivity caused by the Lyme. I encourage you to keep looking if gluten-free doesn't fix your health issues .... definately try gluten-free to see your response. Take charge of your own health and don't worry if people don't believe you're really sick .... many of us have been there!

I was diagnosed years ago (12) with Lyme disease, but then saw a specialist and he said i do not have Lyme disease. However he never did any tests? I wonder if I do have it. i don't have any of the major symptoms, like rashes, bells palsy etc...do you?

[CarlaB]

I was diagnosed years ago (12) with Lyme disease, but then saw a specialist and he said i do not have Lyme disease. However he never did any tests? I wonder if I do have it. i don't have any of the major symptoms, like rashes, bells palsy etc...do you?

I didn't have the rash or bells palsy.

Most docs will tell you that you don't have it. Mine told me my illness was psychosomatic, but that she would do the blood test that I ordered from IGeneX (the only lab that exclusively tests for Lyme, thus the most reliable by far) so that I could get it out of my head. My test was positive. The tests do have a high false negative rate, so it's a clinical diagnosis.

What kind of specialist was it? Who diagnosed you 12 years ago and why? Even with treatment, the bacteria can reproduce and make you sick again. I would definately suspect Lyme (I read your other post).

www.canlyme.com -- go to symptoms and you will see a list of the various symptoms. I have about 40 of them.

[pinktulip]

My dad had manyt of the same symptoms you have plus blood in his stools. They did a biopsy when they did his colonosopy and endo. The doctor told my dad to go on a gluten free diet as he thinks my father has celiacs disease. Before the biopsy was back but after a week of the diet they took another stool sample. No blood, however the biospy came back negative. My dad hasn't had gluten in over a month and the doctor said he has never looked better. While he has no definite diagnosis he is sticking by it because he has had no problems.

[sonja69]

hi everyone!

I am still waiting for better results although I feel better without gluten (at least the headache is gone).

I began to leave out any dairy and use oatmilk in the coffee, but that is not really good. and I am getting nausea afterwards (??)

I cleaned my flat from glutened foods at saturday, everything's fine until monday than its bad again. 2 days bloated like earlier with gluten. can one be so sensitive and then it comes 2 days later?

it comes and goes. it's so confusing. I am keeping a food diary since summer 04 (!!!) and still don't have a clue...

but since food intolerances can give symptoms up to 72 hours later and I am not eating the same food everyday, I will never really know.

what I am really concerned about or bothers me that my upper belly just above belly button always is 'bloated' looks like I had a big sausage hanging there and that is pushing against my lungs while sitting at work at the desktop and hangs over the (low-waisted) jeans like a tire. kind of really annoying because it lowers my concentration. rest of the belly below the belly button is fine most of the time, since gluten-free.

is this normal or what is this? does anyone have the same problem?

abdominal workouts do not help.

next year I will try an elimination diet. a lot work to do...

Sonja

[Guest nini]

oatmilk? Is that from oats? Even if the oats it's made from are gluten-free, some of us react to the protein avenin in oats just like we do to gluten... you may want to try avoiding that too.

[sonja69]

hi nini,

thanks! yeah, I do not know, I am fine with oats, have no more problems with that and the oatmilk I always use in gluten-free mueli and porridge and thats okay. at least I think so, but I will definetly try this too.

I wonder if my liver can be damaged, that might be 'sausage' in my belly, although the liver parameters were fine.

Sonja

[Amiee from NS Canada]

hi all!

had my biopsies (gastroscopy, colonoscopy) yesterday and everything looks fine. the sample results will be coming in january, but my intestines look fine and the whole blood work panel said that I am the healthiest person on earth!!

except for some increased white blood corpuscles (??).

yeah, I am so fit and healthy and feeling great with

- gas (flatulence)

- distented abdomen/bloating

- headaches

- abnormal stools (fatty, floating, with air, sometimes watery)

- no energy

- eczema in the face

- hairloss

I am really devastated, I wish I had a diagnosis (on something, all test are always fine) since friends and family will think I am insane, when I will be glutenfree volontary out of the blue.

and I am so pessimistic about it, I doubt it will help. sorry, but I think it's kind of punishment and I am afraid I have to stick with this problem forever....

Sonja

Hi Sonja,

I know exactly how you feel and I agree with everyone who posted. I myself have been battling for a diagnosis for more than a year now. Symptoms getting worse as time went by. After being tested for everything you can think of one of my aunt's was diagnosed with Celiac and another with IBS. Both my aunt's are now gluten-free and the one that has IBS is feeling better whereas the one diagnosed with Celiac is still having major GI problems. I went back to my Naturopathic Doctor with this new information and she told me that I had to be Celiac too. I have now been gluten-free and DF since Dec. 14th and I am not looking back. With all this struggle trying to find a diagnosis I know my own body and depression, gas/bloating, diarrhea, constipation, fatigue, high blood pressure, tachycardia, dizzy spells, nausea, etc. are not normal no wonder what your family doctor says.

Stand up to your doctor. Do not be afraid they will think you are a hypochrondriac. They most likely think you already are one. I know my doctor thinks I am one and I don't care. I pay for their services, so they should treat me as a customer not a psycho case. I am a bit bitter when it comes to doctor's because my mother was misdiagnosed after her cancer relapsing. Her doctor told her it was stress at home. Can you believe that? After her having cancer a few years before that. Wouldn't common sense say to check for cancer first? Anyways, needless to say my mother is no longer with me and she died at the age of 44. This is why I do not take word for word what a doctor says. I do my own research and come to my own conclusions. Of course my family doctor is there to request the tests, but I have to push for them.

God love ya and stay strong. Good luck on the gluten-free if you decide to do so.

Amiee

[sonja69]

Hi all!

I thought of giving you an update and take the opportunity to thank you all for your help.

I am at home in Germany for xmas (I live in Sweden) and went through a glutenfree xmas time. I am gluten-free since 6th december and feeling better every day. at least in general, there were some mistakes (like crumbs from normal xmas cakes), but everything was very easy. I took with me my own food when visiting friends and family or invited them to my home.

the bloating went away very soon, I am only bloated after meals, but this do not persist the whole time as it used to. my stool is not fatty anymore (sorry), and I maintain a quite normal stool now for 2 weeks, this has not happened for the last 4 years!

I have some winds occasionally and some nausea, but this might be due to some glutening by mistake, which happened the first week here in germany. also here, gluten-free-food is available which makes everything easier.

I do not feel to miss something, when people sitting at the coffeetable and eating creamcakes and I sit there with my gluten-free crackers. at least, I am never going to be 'fat' this way. I hope, everything will be fine and I am motivated to get my body in shape (my belly is quite 'outworned' from the bloated-pregnat-look).

I did/do notive that I became more vulnerable and sensitive to distinct food (fatty, too much) and I am sick for the second time within two month (flu). I hadn't a flu for years. I cannot take much alcohol anymore (I used to drink wine quite often) and I am tired and energyless very often. but I am very optimistic and the light feeling after meals and not feeling stuffed like a turkey afterwards is just a great feeling. I feel very optimistic to become healthy again, a normal person without anger about my stupid body, without depression, without this energyless attitude.

NOw my life begins!!

there's still some work to do: testing if I will feel even better without milk and fructose to get rid of these small symptoms (winds, light fullness after bigger meals), but I am sure, everything will be better.

I hope for everybody that it will be better for them too, with or without gluten-problems.

of course, I sometimes think that life won't be easy, when its coming to travelling etc., but I can prepare and cope for it. I lost years with searching for reasons why I am feeling so awful and why I am getting this stupid bad belly after meals. I got eating disorders and mental problems and now I can see light at the end of the tunnel (and I hope its not the train ).

So everybody out there, do not give up!!!!

I wish you all the best for 2007!!

greatings,

Sonja

[happygirl]

Sonja,

Thanks for posting and keeping us up to date!

Happy to hear that it sounds like you have found part of your problems. Keep working toward being 100% gluten free---only then can your body truly heal and fully regain its strength. I hope you find the other problems out soon, though, too.

You have such a positive attitude---which will help immensely!

Stick around!

Laura

[jeaninedc]

Hi,

I am also for trying the diet. I never got diagnosed myself... I just got an allergy test back saying I was slightly allergic to wheat so my naturopathic doctor suggested I eliminate it. What a difference it made! After 30 years of constant sinus infections, constipation and anemia, it all pretty much went away! So whether I am just intolerant or full celiac, I don't know, what I do know is that it is really bad for me.

I have been on the diet (though I've not been truly strict, i.e. I have had very tiny amounts of gluten till now for example in soy sauce) for about 1.5 years. But then during December I got tempted a few times to eat a bit of wheat (also encouraged by friends who don't realize how bad it can be). At first I figured everything was fine since I really did not feel bad after eating it, but by the end of month I got my first sinus infection since I started the diet. I've now been sick for 2 weeks and all because I ate a few bites here and there.

So, now I am more determined than ever to stick to a gluten-free diet, which btw I have no problems with. I eat like a queen and my boyfriend can't even tell the difference between when I baked with flour and now Takes a bit of adjustment but that is all.

[Amiee from NS Canada]

Hi Sonja,

I am glad to hear that you are feeling better right away. I also started my gluten-free diet the day after you did and I am starting to feel a bit better I believe......at least I can notice a difference in my bowel functions and my bloating. I am still having gas and dull pain in my intestines when I have a bowel movement. I am not so sure what that is, but it comes with cramping as well. I assume it is either because my body does not like soy or corn. I have not figured out which one it is yet.

I started taking Magnesium Glycinate and Probiotics so I am hoping that the constipation will subside more and it seems to be helping. It all really depends on the damage to your intestine so if you do not have much damage your gluten-free diet will make you feel better right away. If they are more damaged then it will take some time, so I am still hanging in there on the gluten-free and non-dairy diet and then I will wait to see my Naturopath next month.

Continue to feel better and keep us updated.

Amiee from NS, Canada

Hi all!

I thought of giving you an update and take the opportunity to thank you all for your help.

I am at home in Germany for xmas (I live in Sweden) and went through a glutenfree xmas time. I am gluten-free since 6th december and feeling better every day. at least in general, there were some mistakes (like crumbs from normal xmas cakes), but everything was very easy. I took with me my own food when visiting friends and family or invited them to my home.

the bloating went away very soon, I am only bloated after meals, but this do not persist the whole time as it used to. my stool is not fatty anymore (sorry), and I maintain a quite normal stool now for 2 weeks, this has not happened for the last 4 years!

I have some winds occasionally and some nausea, but this might be due to some glutening by mistake, which happened the first week here in germany. also here, gluten-free-food is available which makes everything easier.

I do not feel to miss something, when people sitting at the coffeetable and eating creamcakes and I sit there with my gluten-free crackers. at least, I am never going to be 'fat' this way. I hope, everything will be fine and I am motivated to get my body in shape (my belly is quite 'outworned' from the bloated-pregnat-look).

I did/do notive that I became more vulnerable and sensitive to distinct food (fatty, too much) and I am sick for the second time within two month (flu). I hadn't a flu for years. I cannot take much alcohol anymore (I used to drink wine quite often) and I am tired and energyless very often. but I am very optimistic and the light feeling after meals and not feeling stuffed like a turkey afterwards is just a great feeling. I feel very optimistic to become healthy again, a normal person without anger about my stupid body, without depression, without this energyless attitude.

NOw my life begins!!

there's still some work to do: testing if I will feel even better without milk and fructose to get rid of these small symptoms (winds, light fullness after bigger meals), but I am sure, everything will be better.

I hope for everybody that it will be better for them too, with or without gluten-problems.

of course, I sometimes think that life won't be easy, when its coming to travelling etc., but I can prepare and cope for it. I lost years with searching for reasons why I am feeling so awful and why I am getting this stupid bad belly after meals. I got eating disorders and mental problems and now I can see light at the end of the tunnel (and I hope its not the train ).

So everybody out there, do not give up!!!!

I wish you all the best for 2007!!

greatings,

Sonja

[sonja69]

Hi all!

thanks for replies and for all support!!

I think I will keep this thread as a diary, it's good for me too.

I am back from germany since sunday night and I am bad again. cannot figure it out, maybe I was too happy too early. almost every 'poop' is back, really have no idea why. bloating, gas, big belly, nausea...thank god not the headache, but still...

I had lactosefree diary in Germany - it was okay. I have lactosefree diary here in sweden and it's bad again. the only thing I could imagine is that I got glutened by throwing away the few gluten food I had still at home, that was on monday morning. I was very careful with the the wheatflour, but still... tuesday was quite okay, but today on wednesday, I am really bad again. I am so angry, will this never stop?

can one be glutened by glutencontaining catfood? I of course do not eat it but I am handling it....

sometimes I think, there's something in the water...but this cannot be, or? I only drink tap water.

Or the coffee, can it contain wheat?

I have no idea, but I am feeling so bad and hopeless again, I don't understand....

but I have to keep going, must not give up.....

best wishes, Sonja

[ravenwoodglass]

Hi all!

thanks for replies and for all support!!

I think I will keep this thread as a diary, it's good for me too.

I am back from germany since sunday night and I am bad again. cannot figure it out, maybe I was too happy too early. almost every 'poop' is back, really have no idea why. bloating, gas, big belly, nausea...thank god not the headache, but still...

I had lactosefree diary in Germany - it was okay. I have lactosefree diary here in sweden and it's bad again. the only thing I could imagine is that I got glutened by throwing away the few gluten food I had still at home, that was on monday morning. I was very careful with the the wheatflour, but still... tuesday was quite okay, but today on wednesday, I am really bad again. I am so angry, will this never stop?

can one be glutened by glutencontaining catfood? I of course do not eat it but I am handling it....

sometimes I think, there's something in the water...but this cannot be, or? I only drink tap water.

Or the coffee, can it contain wheat?

I have no idea, but I am feeling so bad and hopeless again, I don't understand....

but I have to keep going, must not give up.....

best wishes, Sonja

Sonja, simply put the answer to the cat food query is yes. My mystery glutenings did not stop until I switched them to nongrain food and gave away my parrot.

[Amiee from NS Canada]

Hi Sonja,

Have you checked your non-dairy liquids (i.e. Soy milk or lactose free milk) if that is what you are consuming? Some non-dairy liquids can have gluten in them. The best way to make sure is to contact the manufacturer of the product you are using.

As for the cat food, I suppose it can be the same issue as shampoo, conditioner, lotions, etc. but if you are not getting it on yourself without washing there would be no reason. You have to ingest gluten for it to damage your intestine, so therefore with shampoo, conditioner, lotion it can possibly get ingested by mistake (finger biting, chewing on hair, etc.).

Just be very wary of what you put in your mouth and also beware of cleaning up so that your foods do not get contaminated.

Water is gluten-free, but I would check the coffee. If you are brewing it yourself and it is not flavoured then you should be fine. If you are buying it somewhere check with your server.....especially if your are not drinking it black. I know here in Canada and the US a lot of coffee shops (i.e. Starbucks and Second Cup) have dairy in their mixes, so if you want to make sure you are not getting any diary then just have a latte with tyrrany syrup because it's just sugar and water.

Hope this post helps. Good luck.

Amiee from NS, Canada

Hi all!

thanks for replies and for all support!!

I think I will keep this thread as a diary, it's good for me too.

I am back from germany since sunday night and I am bad again. cannot figure it out, maybe I was too happy too early. almost every 'poop' is back, really have no idea why. bloating, gas, big belly, nausea...thank god not the headache, but still...

I had lactosefree diary in Germany - it was okay. I have lactosefree diary here in sweden and it's bad again. the only thing I could imagine is that I got glutened by throwing away the few gluten food I had still at home, that was on monday morning. I was very careful with the the wheatflour, but still... tuesday was quite okay, but today on wednesday, I am really bad again. I am so angry, will this never stop?

can one be glutened by glutencontaining catfood? I of course do not eat it but I am handling it....

sometimes I think, there's something in the water...but this cannot be, or? I only drink tap water.

Or the coffee, can it contain wheat?

I have no idea, but I am feeling so bad and hopeless again, I don't understand....

but I have to keep going, must not give up.....

best wishes, Sonja

[ArtGirl]

Sonja, it sounds like there is something in your home that is glutening you.

There is a very enlightening thread on this board Open Original Shared Link - one poster mentioned that they had to throw out the sugar they had in a canister because it had been contaminated with flour from pre-gluten-free baking.

Often it's the non-obvious things that can "get" us. And don't discount the cat food. After eating cats lick their coats - you pet the animal and some of the gluten could get on your hands that way. My dogs eat gluten-free food - it's just safer for me that way.

[sonja69]

Hi all!

thanks for your comments. glutened by the cat food, I cannot imagine that, but it seems that everything is possible with this desease. it's really hard to get cat food without wheat contents or other grains. but I can try to handle it more carefully.

other things I checked in my head: I use lactosefree milk and oatmilk sometimes (brand oatly, should be glutenfree says the producer). the lactosefree milk I cannot imagine how gluten can get in there...

I bought new bowls and pans...

I brew my coffee by myself every morning and take it with me to work. maybe some producers powder the beans before roasting and graining? I do not know.

the only thing I can imag

[ArtGirl]

It surely is a game of detection

I hope you're able to isolate the problem(s) soon. But, don't throw out the cat!

[lonewolf]

This is an "off-the-wall" question, but are you sure you're being glutened? Could it be something in your flat like mold? It seems strange that you were fine in Germany but got sick again as soon as you got home. We used to have mold in our home and I would feel yucky here and much better away. We discovered it and fixed it and now it's fine. Just a thought...

[PeggyV]

I would try the diet, you have nothing to loose and everything to gain. It worked for me. I think there are still things out there they do not know about this.

[hillyb6]

I am still waiting for better results although I feel better without gluten (at least the headache is gone).

[sonja69]

Hi !

thanks again. it's all so confusing and today I really feel like crap. it's getting worse and worse...

no, of course I'll never leave my cat...He's my everything I bought some gloves to handle the catfood and triy to remember washing my hands after cuddling.

yes, I had a mold problem, but I think I have fixed it and find it hard to believe that bloating and gasses comes from mold.

and it does not seem to be the problem, since I got originally the idea of having problems with gluten through cutting out carbohydrates from my diet when I tried the Atkins diet. I felt really fine everytime I cut the carbs out (3 times), although I ate lactosefree cheese, milk, yoghurt... So, everytime I cut them out I felt fine but after reintroducing them, the problems were back. after some research I tried it with glutenfree.

in germany, I was 80% better, but I had bad days too, of course. but I thought I am on the right track but no I am a little in doubt, and I don't have a diagnosis either.

I got more and more sensitive, so I think I have to cut out diary, and these glutenfree surrogates like bread, pasta etc. and hope it'll be better.

this is so tricky, you have to be careful about everything, how can I ever be sure, that there are no traces of gluten in e.g. buckwheat or millet or rice. or teabags, can they contain gluten?

best, Sonja

[ArtGirl]

how can I ever be sure, that there are no traces of gluten in e.g. buckwheat or millet or rice. or teabags, can they contain gluten?

Tea bags do not congain gluten - they are stapled or crinkle-pressed (is that the correct term???). If they were "glued" with gluten, they would fall apart in hot water.

Re: the headaches. It certainly could be from gluten, but it could also be from something else. Could be environmental - exposure to an airborne allergen, etc. I get headaches if I go without my cal/mag supplement - seems I need that magnesium. Will get non-stop dull headaches without it.

How long have you been gluten-free? It just may take more time for your system to heal and you may find that gradually these pesky symptoms will go away. My main symptoms are GI, mostly D. Even gluten-free (and other allergen-free like corn - that was a biggie for me), after several months into the change of diet and being very careful I still had ups and down with the D. Someone here posted about the supplement L-glutamine and I found that after only a few days of taking this the D cleared up and I felt so much better all around.

So I guess what I'm saying is that it takes some time, not only to heal, but to find out what causes what. Can you get a food-allergy panel done by your doctor? If not, then perhaps you'll need to do the elimination diet sometime in the future to help isolate problem foods. But cutting out dairy would be a good place to start as many people, once their villi begin to heal, find that they are sensitive to casein and have to eliminate that for a while (perhaps a year) until more healing takes place.

Hang in there - you WILL get better and better.

Edit: Some people really need to have a diagnosis to feel confident about what they are doing. Some don't. In reality, improvement after going gluten-free IS a diagnosis. I chose to have Enterolab tests done, mostly because I was curious about the genetics and wanted to know if I was actually celiac or "just" gluten-intolerant. Bottom line, though, nothing changed with the diagnosis - I'll never go back to eating gluten.