I Thought I Knew It All

[daneinter]

Hello to all.

After 20 years of being a coeliac I thought I knew it all, I had been down every avenue and experienced many things.See the fantastic change in available foods and helpful packaging. (in the begining my bread came in a tin and tasted like cotton wool!)I had run the gamut of denial and resentment and considered that I had my life in order and was actually quite content with the fact that I was a coeliac. I always kept up wwith new trends and info but I deliberatly did not discuss or join any groups as it seemed to me that you had to accept and get on with it. BUT (there had to be a but) somethings changed and I feel so scared.

3 years ago I started to feel unwell, gastro symtoms, horrible sticky motions unexpected weight loss (12 kilos), anxiety, depression, insommnia. gut pain All the things in fact that would make most doctors think I had coeliac disease but heres the rub, I discounted this as I thought I had it under control and it must be something else. after banging my head against the wall (and feeling like i wanted to bang a few doctors heads as well!!) a diagnosis of depression was the only solution it seemed. Now things have changed. A new doctor see,s something sinister he thinks and has sent me for a series of tests one of which has the heading Lyphoma/?? on the test sheet. some research has led me to see that a form of coeliac disease (refractory) does not respond to a gluten free diet and can be dangerous.

i had always known that I was very sensative to gluten and as the years have passed have seen many things removed from my diet( cornflakes, lager, mars bars etc) but now I can eat very little. i cannot abssorb any fats and any roughage gets immediatly ejected undigested. I could fly kites with the amount of wind I generate and the pains in my muscles are so bad coupled with an enormous fatigue. I just cannot see how I am injesting gluten as I eat so little and haave been on so many self imposed exclusion dets to see if I can slve this problem.

I know ts a bit of a rant but I eel so low and my concentration is so poor. Does this ring any bels, have you been down this rocky road, can anyone offer me some help or hope??....thaks for looking

[CarlaB]

Welcome!

I am guessing by your spelling of celiac that you are in Europe. Do you eat things that are marked gluten-free by the Codex Standards? If so, they do allow so many ppm of gluten in those products. They are not completely gluten-free. If you're eating them, you could be getting enough gluten to be causing the symptoms.

I also wanted to mention, it's easy to think you're going to die from some deadly disease while you are going through testing. Don't worry yourself. If you turn out to have something serious, then worry then. Your doctors are just trying to be thorough.

Good luck, and keep us posted with your test results. Not only will we be curious, but it's also a help to others who might be having your same problems to see the outcome of your testing.

[lfij]

Welcome!

I am guessing by your spelling of celiac that you are in Europe. Do you eat things that are marked gluten-free by the Codex Standards? If so, they do allow so many ppm of gluten in those products. They are not completely gluten-free. If you're eating them, you could be getting enough gluten to be causing the symptoms.

I also wanted to mention, it's easy to think you're going to die from some deadly disease while you are going through testing. Don't worry yourself. If you turn out to have something serious, then worry then. Your doctors are just trying to be thorough.

Good luck, and keep us posted with your test results. Not only will we be curious, but it's also a help to others who might be having your same problems to see the outcome of your testing.

CarlaB's right, it could be something, it could be nothing, but don't worry about it while you're being tested. It may be something unrelated to celiac. hang in there!!

[Teacher1958]

Hi,

I'm sorry you're going through all of this. I just figured out in April that I have either celiac disease or a gluten intolerance after 42 years of symptoms- depression, diarrhea, vomiting, ADD, mouth sores, myoclonic jerks, extreme amounts of gas, etc. Then in October 2006, I began to have significant pains in my muscles/joints, extreme fatigue, insomnia, more irritable bowel symptoms, extreme spaceyness, and a worsening of the depression. I knew something was wrong, but the tests didn't show anything, so by the process of elimination, I was diagnosed with fibromyalgia. Fast forward to 2007 when I began to have this new, very strange symptom- this is disgusting, so bear with me- BM's that stuck to the sides of the toilet and wouldn't go down when I flushed and also had an oily sheen on the water above them. For some reason, this seemed alarming to me, but I let it go on for a couple of months, even though I was losing weight really fast. Then I went on vacation, and the intestinal symptoms got very bad and the weird symptom increased in frequency. I had my laptop with me, so I started doing web searches on this specific symptom, and lo and behold, gluten sensitivity/celiac disease was the only thing that came up every time! I was relieved, but I was also very angry with all of the doctors who had missed this problem for 42 years!!! Anyhow, I stopped eating wheat immediately, and within days, I was feeling so much better! I've accidently ingested gluten twice since April, and the symptoms came back. It took several days for the gluten to clear my system. I am going to go to a gastroenterologist, and I have an appointment for a colonoscopy in a couple of weeks to find out why I am having pain in my lower left side into my back after I have a BM. My bone density test came back normal, so I am really hoping that my body has not been damaged as much as I fear. I, too, am afraid of getting lymphoma or one of the other cancers to which we are so much more susceptible. I know now that the BM's sticking to the toilet were a major sign of malapsorption.

Do you have any idea why your doctor thinks you have lymphoma? Do you think that maybe he is just being cautious? I know you must be terribly scared. I wish there were something I could say to make you feel better, but I've had this for such a short time that I probably don't know as much as the others in here. Keep posting here and try to find a support group in your area. Let us all know how you're doing.

Brenda

[radgirl]

Much love and good thoughts coming your way. Are you in contact with a physician to help you out? Has your diet changed? Is all of this new?

[daneinter]

I caught on to the gluten free foods trap some years ago and now never eat anyfood with gluten free wheat starch as i know it can have low levels and wherever possible only eat fresh foods. I am scrupulus to the point of being nerdy about gluten and do not take chances. I suppose my worry is that I now eat so little that I have no idea where any gluten can be creeping in.

A concern is that as the years have gone by new research has vetoed many items that were once considered safe (it used to be said to be ok to drink lager as it had been pasturised,cornflakes were said to be ok) and I do wonder if I have damaged my gut and opened myself up to problems due to this. Its the weight loss that really scares me as its going down every week.

i reallyappreciate your replies. I guess Its all come as a bit of a shock to me as i thought I had it all under control after 20 years

[mftnchn]

I'm not really sure, these are all good suggestions.

I just wonder if it could possibly be soy intolerance? Soy seems to be the other food that I have seen referred to as causing stunted villi in the small intestine.

[jerseyangel]

A couple thoughts come to mind--

Are you checking all of your personal care products, medications and vitamins? Formulations can change.

The other thing is the possibility of additional food intolerances. Soy, corn, and dairy products can bother some people, although your symptoms sound more gluten-related to me.

Best of luck in tracking this down!

[cruelshoes]

Sorry you are going through this rough patch. I can imagine I would be nervous too. If gluten has been creeping back into your diet over the years, your doctor should be able to tell from a blood test. If your antibodies are coming back positive, you will know that you have more detective work to do to figure out where it is coming from.

It is not uncommon for celiacs to develop other food intollerances months or even years down the road. That could definitely be a problem. Have you kept a food diary to try to trace your symptoms back to what you are eating? How about working with a dietician to try to find some new things to try?

For what it's worth, current medical belief is that refractory sprue is very, very rare. I have met hundreds of celiacs in the last 2 years since my diagnosis, and I have only known one person with it. And she was willfuly eating large amounts of gluten for many years. I think your doctor is being thorough by testing you for everything under the sun. Best not to worry about the titles of the tests.

Hope you feel better soon.

[jmd3]

A new doctor see,s something sinister he thinks and has sent me for a series of tests one of which has the heading Lyphoma/?? on the test sheet. some research has led me to see that a form of coeliac disease (refractory) does not respond to a gluten free diet and can be dangerous.

i had always known that I was very sensative to gluten and as the years have passed have seen many things removed from my diet( cornflakes, lager, mars bars etc) but now I can eat very little. i cannot abssorb any fats and any roughage gets immediatly ejected undigested. I could fly kites with the amount of wind I generate and the pains in my muscles are so bad coupled with an enormous fatigue. I just cannot see how I am injesting gluten as I eat so little and haave been on so many self imposed exclusion dets to see if I can slve this problem.

I know ts a bit of a rant but I eel so low and my concentration is so poor. Does this ring any bels, have you been down this rocky road, can anyone offer me some help or hope??....thaks for looking

It does sound as if you are ingesting some sort of gluten with the brain fog, and fatigue...

Lymphomas are different then Lypomas or Lipomas

Lipoma is where your body absorbs the fat instead of ingests it, you get a little fat deposit, and it can grow...You have surgery and then have it removed, They are okay, and basically safe, but they also can come back.

My problem was my lypoma, that I had for about 1 year, turned into lyposarcoma - cancer - it grew to an 8# tumor in 2 months., big as a cafeteria tray - 13x15, I know hard to believe, but I have the scars to back me up...(these can come back too) Not trying to scare you in anyway, just telling you about me.

Again, lypomas are usually safe, and can be taken care of easily! Please make sure you get your check-up!

[daneinter]

I too have thought of other intolerances as this thing started 3 years ago now. Over this time I have excluded dairy and soy too no effect. for some time I ate nothing but fruit but still it came back. The maddening thing is that some days I feel fine. The only constant seems to be around my motions to put it bluntly. when i feel rough they are yellowish fatty and sticky. I have had tests already such as Gall bladder and a colonoscopy 2 years ago which were negative except for some polyps.

I think as a coeliac we become like detectives trying to track down seccret gluten sources but I have always had the attitude that I have to try and live a normal life and refuse to allow this disorder to overtake my life. i hate fuss when visiting and would rather do without than panic my host and like many others developed coping strategies. Thank god for rice crackers and so on. I suppose if I am guilty of anything it is that I have always resisted groups and concentrating on my condition. In England we have lots of local groups who meet to discuss everything coeliac and have tastings and cookery sessions and i can think of nothing I would like less than do that. Thats whyI headed this thread as I did. We british have a saying "stiff upper lip" and I guess that is me. I just cope and get on with it which is why I feel so gutted this has happened and feel i have gone back to the begining. My initial illness was so very disabling and scary 20 years ago with massive weight loss and it took me years to recover as the villi were very damaged. My previous constitution was very robust with an ability to eat anthing anytime whereas after I had a poor appetite and a lot of previously enjoyed foods upset me.

I really appreciate your help and input folks. It helps so much to discuss this weird illness we have with people who understand. Already with this site I have discovered certain things I thought were just me are in fact common such as insommnia. I could sleep for england before diagnosis but have rarely slept more than 3/4 hours since. I will keep you posted and thanks again

[Canadian Karen]

Do you have your own toaster? Also, do you have your own pots/pans and cooking utensils?

Karen

[Ruth76]

hi daneinter,

you ever thought of a fructose intolerance?

A lot of people with celiac disease can't digest fructose.

If so, you would have problems with sugar, honey, syrup, fruits and aspartame etc.

...that's why I can't understand why there is still everywhere sugar in gluten-free products.

[jacqui]

I caught on to the gluten free foods trap some years ago and now never eat anyfood with gluten free wheat starch as i know it can have low levels and wherever possible only eat fresh foods. I am scrupulus to the point of being nerdy about gluten and do not take chances. I suppose my worry is that I now eat so little that I have no idea where any gluten can be creeping in.

A concern is that as the years have gone by new research has vetoed many items that were once considered safe (it used to be said to be ok to drink lager as it had been pasturised,cornflakes were said to be ok) and I do wonder if I have damaged my gut and opened myself up to problems due to this. Its the weight loss that really scares me as its going down every week.

i reallyappreciate your replies. I guess Its all come as a bit of a shock to me as i thought I had it all under control after 20 years

Sorry to hear all this but I am very interested to learn from you b/c I have many of the same symptoms. I was told by my celiac disease GI that I have leaky gut or probably have leaky gut...I can't remember. I also have had new symptoms since all this started ~2 years ago, which are the ones you write of. We are strict gluten-free for ~1 1/2 years.

Do not stress yet b/c it may be nothing and stress will just cause more damage.

Good luck and God Bless!

Jacqui and Family

[jacqui]

It does sound as if you are ingesting some sort of gluten with the brain fog, and fatigue...

Lymphomas are different then Lypomas or Lipomas

Lipoma is where your body absorbs the fat instead of ingests it, you get a little fat deposit, and it can grow...You have surgery and then have it removed, They are okay, and basically safe, but they also can come back.

My problem was my lypoma, that I had for about 1 year, turned into lyposarcoma - cancer - it grew to an 8# tumor in 2 months., big as a cafeteria tray - 13x15, I know hard to believe, but I have the scars to back me up...(these can come back too) Not trying to scare you in anyway, just telling you about me.

Again, lypomas are usually safe, and can be taken care of easily! Please make sure you get your check-up!

I keep forgetting but I too just recently had 2 lypomas removed from each flank that they were not sure what they were until they were removed and luckily were benign.

[jacqui]

ditto regarding insomnia. I was dx'd in Dec. 2006 and learned from here too that many C's have insomnia. Very bizaare

[stef-the-kicking-cuty]

That sounds a little bit like you are getting gluten from somewhere. I would go over everything one more time real careful. Maybe you find something?

[sailorjo]

I have been diligent about my gluten intake since being diagnosed in 2000. In 2001 I somehow ingested gluten and found out when I got violently ill with projectile vomiting, passing out, sweating out of every pore in my body and then needed to sleep for a couple of hours. The reaction has happened a number of times and I have never ingested gluten on purpose.

For that reason when the doctor found gluten in my blood work, I was very surprised. It seems the reasons discovered were from licking envelopes, stamps and my lipstick. I had no idea that I was ingesting gluten this way. Our disease is so sensitive and they are still discovering surces of gluten, we must be very careful.

By the way, I have gained a lot of weight since I was diagnosed and am now overweight, which Dr. Green told me is not uncommon. Lucky me!

[barbara123]

Sorry to hear all this but I am very interested to learn from you b/c I have many of the same symptoms. I was told by my celiac disease GI that I have leaky gut or probably have leaky gut...I can't remember. I also have had new symptoms since all this started ~2 years ago, which are the ones you write of. We are strict gluten-free for ~1 1/2 years.

Do not stress yet b/c it may be nothing and stress will just cause more damage.

Good luck and God Bless!

Jacqui and Family

Do you know for sure that stress causes more damage...? I have been gluten-free for about 3 months, Felt alot better for about a month.. Still eating what I am pretty sure strictly gluten-free almost all whole foods, staying away from canned food, frozen food, changed my cookware, including utensils and no spices, all personal items are gluten-free dont know what else I can change... I have a VERY stressful life My daughter has been missing for about 3 weeks. Her kids lost their mother (she didnt take them) thank god she is in trouble with the law. her 5 year old started pooping pants again and dont know if they will even let him go to school. They live 2 hours away, go their when I can. to sick most of the time to take the drive.

I was wondering about stress making it worse but haven't been able to find out if that is the case or not. Not that I can do anything about the stress but it would be nice to know for sure it is the stress that is causing all the symptoms to return.. Constipation is the main problem haven't been able to go for about a week now, stomach pains, and anger blowing up at my dh over the littlest thing....

I guess i am ranting again. I am shaking like a leaf, hurting like h@#$.. wondering how this has happened to me... Cant take anymore Stck a fork in me IM DONE!!

[UnderHisCare]

Barbara,

I am new to this forum, but have been a diagnosed Celiac for over 15 years and wanted to reply to some of your concerns. First, gluten takes approx. 6 months to leave the system, so you may still have many symptoms until ALL of the gluten leaves your body. Additionally, your "gut" is related to your stress level and with all that you have going on in your life; it is imperative that you make sure your diet truly is gluten free in all areas - if in doubt, get involved with a local support group and have an experienced Celiac go over all that you are ingesting and putting on your body, as well as in your kitchen. There is so much to learn and very body is INCREDIBLY sensitive - especially in that first year. Also, be consistently having a TTG blood test yearly so they can be monitoring your gluten intake (a normal number value is under 15, I believe...mine is now at 4, which is incredibly low for a celiac - which means I strickly adhere to being gluten free...I state that to give you hope . Best of luck.