Unconfirmed Diagnosis - And Lots Of Anger

[GF in BC]

Please let me pre-apologize for a very long first post.

 

Brand new here and I cannot explain how (oddly) reassuring it has been to see posts that are similar to my own experiences. 

 

Just over 43 years ago I was diagnosed with two ulcers and IBS. Yes, an eleven year old kid with ulcers (gastric and duodenal). The IBS was so life limiting as a teenager and I can't honestly remember a time when I didn't have a stomach ache - some bad, some excruciating. The agony was such that many, many times I would pound my thighs with all my might to try and transfer some of the pain elsewhere. Suffice it to say, it didn't work and I didn't wear many dresses as the black and blue marks were hard to explain.

 

Over the years, I tried to learn a way to cope. One of those ways was to simply stop eating, period. I once went for 28 days only eating life saver candies. I was desperate to find a way to be 'normal'. Karen Carpenter died of anorexia during this time and scared me back into eating. First thing I ate was a cheese sandwich. Within 30 minutes I was in agony. 

My family got used to seeing me sit at large extended family dinners with an empty plate. I was starving, but I knew if I ate something, ANYthing, I would spend the rest of the night in the washroom. Not only would there be physical pain, but emotional pain as I can't describe the embarrassment factor. Eventually, it became normal for me to always feel "sick". I gave up going to the doctor, as x-rays, barium enemas, ultra sounds etc, showed nothing wrong. So, it was accepted that it was all in my head. 

 

UNTIL, the beginning of December. I was at my GP's office for a follow up to my annual check-up. He has always been concerned that my iron is so very low. I don't tolerate supplements and now that there is no 'feminine reason' for me to have low iron, he wanted to delve more deeply. We also chatted about my inability to get a decent sleep (after he had no success with holistic attempts, he finally tried a prescription for me that still didn't work) and the depression that I attributed to PTS (never recovered from the sheer terror of watching my child fight liver cancer - even though he is cancer free now). Somehow, and I have no idea why I even said anything, I mentioned the IBS. This GP has been our family physician for 15 years and I never bothered to mention a problem because it was so much a part of my life that it no longer seemed wrong. 

 

My GP immediately sent me for bloodwork to test for celiac. I had never really heard about it other than knowing that the gluten-free diet was something sufferers had to follow. Unfortunately, I decided to stop eating gluten at that moment, not realizing that I needed to have gluten in my system for the blood test to work properly.  By the time I managed to get to the medical lab, it had been almost two weeks since I'd eaten anything with gluten so of course the test was negative. 

 

A few days later I hosted a Christmas work function and had it catered. Although I still wasn't eating gluten, I was SO new at it that I had no idea that gluten could be found in a quiche even if I didn't eat the pastry, or in salad dressings. After two weeks of not having one tiny stomach pain, I ended up ditching the party and going home as I was so ill that many of my co-workers were concerned. I swear, I would have considered going to the Emergency room as the pain was so bad I thought something horrible was going on. The only thing that kept me home was there was no way I could even think about leaving the washroom. 

 

It's now about a month since I started eating gluten-free and other than the party incident and one other problem with restaurant food, I have been PAIN FREE. It feels weird. I can eat and actually go out afterwards. I don't have to decide between seeing a movie or eating dinner. I am trying to find the right balance between calories and getting enough fiber but that will come as I explore this further.

 

My GP says I don't need an official diagnosis. It's more than obvious to him that I have, at minimum, a severe gluten intolerance, and at most, full blown celiac. Either way, I'm staying away from gluten and it's no longer even on my radar as something I want to ingest. 

 

The anger comes from having to suffer for so incredibly long without having anyone, including my own parents, consider that I truly was in pain on a daily basis. Every single Saturday morning: fluffy pancake breakfast = me gone for most of the day, pounding the daylights out of my legs. Surely that should have been a sign that something needed more investigation?

 

If you have managed to get through all of this, thank you. You have no idea what it means to me to be able to put this all down in writing and have someone who understands read it. I'm a 54 year old woman sitting here in tears, thinking that finally she might be able to start living her life. 

 

 

[nvsmom]

(((HUGS))) I wa sdiagnosed a decade sooner than you but I felt the same frustration and anger. I found it maddening that I had lost so many opportunities and so much time to poor health because no one was paying attention...

 

You might want to suggest to your children to get tested as well. It is a genetically linked disease that could affect them too.

 

I hope you have a fast recovery and 2014 is a wonderfully healthy year for you. Welcome to the board.

 

ps Where are you in BC? That beach looks like Parksville!

[GottaSki]

Welcome!

 

You are not alone -- many of us were diagnosed very late and suffered for years with symptoms dismissed or misdiagnosed by our doctors.

 

The anger is valid, but will pass as you continue to improve.

 

I wish you a speedy recovery, but it can take time for all symptoms to improve -- let us know if you have questions.

 

Oh...if you haven't read it yet, give this thread a good read...

 

Newbie Info 101 - Celiac Disease - Coping With - Celiac.com Celiac Disease & Gluten-Free Diet Forum

 

Hang in there

[PennyLH]

I am also new here (again)?  I have followed this website for years, it is full of tons of wonderful information!  My daughter had a similar history, I can not count the times she became to sick to stay at school after her lunch hour.  Many teachers, the counselor thought it was anxiety or stress related.  Wound up in the after hours med center and the ER a couple of times, dehydrated, had to have an IV...  she was diagnosed with IBS and they gave her Nexium... contains gluten, she was sicker  than ever could nt even take it for a week.  

 

I am sharing all this info because this is after we know my sister was celiac for 3 or 4 years (self diagnosed in a dentist office reading a magazine when her family doctor was fearing luekemia because she was anemic for many months, sick... after 6 months of prescription iron and shots...)  So her Dr tested, did a scope, was amazed that "oh my goodness, you do have Celiac Disease..".  

 

This was after another nephew diagnosed at about 17 after several hospital visits lasting a week or more and tests for everything under the son, eventually diagnosed Celiac... he is 27 now.  

 

My sister's daughter had similar issues, hospitalized as a senior in high school for a week, really sick... no diagnosis... they did a scope and said she was borderline, she could probably eat gluten on the weekends (college kid, probably wanted pizza...)  WHAT???  Anyway, I found out along with my daughter about 5 1/2 years ago we are both Celiac... my daughter was hypothyroid, this condition was tested for after sharing symptoms with 1/2 sister and requesting a test, they said she was way too young.  This was after years of being sick.

 

More recently the medical community is becoming more in tune with sensitivity and Celiac Disease, my daughter's doctor told her pretty much she was sorry for initially telling her no-way 3 or 4 years earlier...

 

We have since found several other family members and friends who after sharing info went on to find out they too suffered from Celiac.  The good news is you don't need a fancy prescription to be on your way to feeling totally amazingly better  All you have to do is not eat gluten.  the down side is it can be in many, many things, ibuprofen, seasonings, ketchup, whatever... but there are many resources for finding out what is okay and not.  I sort of started with the basics and added to my diet after checking  out the particular foods.  It can be depressing for sure, however, I seemed to kind of work through these times, visit a forum or friend for support and just marvel to this day about how much better I feel (and all the other family members).  

[eers03]

I am so unbelievably happy for you that you are finding some physical relief.  Bless your heart.  I agree with nvsmom, you may consider having your son tested as well.  I am so glad he is on the front end of his fight with liver cancer.  That had to be absolutely maddening.  Welcome to the forum.  You are in good company here.  I like to think this is a fine group of folks that really try to help each other make sense of life with celiac disease.

 

Here's to a happier New Year!

[BelleVie]

Oh, BC, I'm so sorry that you feel this way, and I can completely relate to your anger toward your parents not considering the pain you were in. I grew up without even having a primary care physician or a pediatrician. When we got sick, we just went to the least crowded "convenient care" center, so my medical records from childhood are dispersed across who knows how many medicine centers. I had celiac symptoms all during childhood, but they were mostly ignored by my parents, or treated with Tums, advil, or advice to stop being a hypochondriac. Ha. 

 

I think that you are justified in feeling angry, and I think that you should allow yourself to feel all of that anger and to let it out. But then, after you've done that, let it go and move on toward getting well and being able to enjoy life again. I think that those of us who are aware that gluten makes us sick are the lucky ones. I'm sure there are so many people that spend their entire lives being sick, never knowing that they could have been well. That makes me really sad. 

 

This community is a wonderful resource for information and support, and you are SO welcome here! Lots and lots of love, and I hope you start feeling better and better and better. 

[GF in BC]

Thank you for your responses!!  I spent a few hours reading through many of the posts here and I felt that this would be a very supportive place to land - I was right

 

I'm sorry there are so many people that have had to travel along a similar road before finding an answer. I know it is especially hard when you're young.  I'm lucky that I did have medical facilities available to me, but it didn't help much when the drs were the ones missing the clues the few times my parents did bother to take me in. Once was because the pain got so unbearable I became hysterical and couldn't stop screaming. The neighbours weren't too happy about it. That doctor visit garnered me some white pills that were supposed to ease the 'gas pains'.  I just shake my head when I think about it now. 

 

My son was tested for celiac last year. He had the biopsy and it came back negative. He suffers much the same as I did but it didn't start until after chemo and the drs figured it might be because all the good flora was killed. We did years of acidophilus and bifidus to try and encourage regrowth. He is now 23 and I think I am going to forward him a link to this forum so he can see that even a negative test result doesn't necessarily mean he's not dealing with a gluten intolerance issue. I didn't realize that and I know he didn't. He went back to eating 'normally' as he understood it must be something else, not celiac (or celiac-related). I hate to think that he still suffers when he's already gone through more pain than a child ever should have to bear.

 

I could write a novel right now as it's like I've found a safe place to let everything go, but I'll respect your time and post over the next few weeks.

 

Thank you again for being here!

[GFinDC]

Welcome gluten-free in BC!    Looks like we are name buddies.

 

They say the average time to get diagnosed with celiac disease in the USA was 9 years, but is now some what less than that.  It's a condition doctors don't think to test people for.  And it has many symptoms that overlap with other conditions.  Plus doctors are big dummies!   Many times people on the forum have reported their reactions got more severe after being gluten-free for awhile.  I know my body seemed to get more sensitive after going gluten-free.  Anyway, we are glad you are here and I hope you get better soon.

 

Some starting the gluten-free diet tips for the first 6 months:

Get tested before starting the gluten-free diet.
Get your vitamin/mineral levels tested also.
Don't eat in restaurants
Eat only whole foods not processed foods.
Eat only food you cook yourself, think simple foods, not gourmet meals.
Take probiotics.
Take gluten-free vitamins.
Take digestive enzymes.
Avoid dairy if it causes symptoms.
Avoid sugars and starchy foods.
Avoid alcohol.
Watch out for cross contamination.

Helpful threads:

FAQ Celiac com
https://www.celiac.com/gluten-free/forum-7/announcement-3-frequently-asked-questions-about-celiac-disease/

Newbie Info 101
https://www.celiac.com/forums/topic/91878-newbie-info-101/

[greenbeanie]

Thank you for sharing your story. I am only 38, but I also went through over 30 years of increasingly-severe symptoms that everyone kept brushing aside until I finally figured out the problem myself. I still seethe when I think of all the dismissive and downright ignorant things doctors have said to me over the years. Like you, I finally got so tired of being told there was no physical cause for my health problems that I stopped even mentioning them and just resigned myself to feeling miserable. It was not until I had a daughter with almost identical symptoms that I finally summoned the will to argue with doctors, insurance companies, and family members until someone would take my concerns seriously. It was an awful experience. But finally I found a doctor who agreed to test us, and my daughter got a clear celiac diagnosis. As a mother, I feel like figuring this out for my daughter is the best thing I ever could have done, and there is a lot of satisfaction in that. My own tests were negative, and so I also have no confirmed diagnosis despite an astonishing turn-around in my health on a gluten free diet. It does bother me to still have no medical validation, and especially to be told that I am "lucky" not to have a celiac diagnosis like my daughter. Unless someone has been through it, I don't think they can ever really understand what a relief a diagnosis would be after so many years of unexplained problems. But as you say, it is amazing to have this opportunity to finally enjoy life.

After a few weeks gluten free, I suddenly realized that I felt no different after eating than I did before eating - except that after eating I felt full instead of hungry. How wonderful!

I hope you improve quickly, and welcome to the forum.

[GF in BC]

(((HUGS))) I wa sdiagnosed a decade sooner than you but I felt the same frustration and anger. I found it maddening that I had lost so many opportunities and so much time to poor health because no one was paying attention...

 

You might want to suggest to your children to get tested as well. It is a genetically linked disease that could affect them too.

 

I hope you have a fast recovery and 2014 is a wonderfully healthy year for you. Welcome to the board.

 

ps Where are you in BC? That beach looks like Parksville!

 

The picture is actually in Utah, the shores of the Great Salt Lake but I agree, it does look like Parksville (one of my favorite places). 

I live on the border of New Westminster and Burnaby.

[nvsmom]

That's a lake? Wow. Neat spot!

 

Liver disease, and I believe primary liver cancer, are linked to celiac disease too. I don't know if it is a strong link though.  Open Original Shared Link

 

Your son should probably be tested again and try the diet if he suspects gluten is a problem for him.

 

Best wishes

[1desperateladysaved]

I relate to mourning.  It is okay to grieve.  I don't know why our situations  were only revealed years after the onset of symptoms.  I know I had a part in it.  My parents and doctors had a part in it.  BUT WE DID NOT KNOW!  All of the training we had couldn't tell us what was the problem. 

But now, I am better (After 30 years of symptoms).  I have hope for you to recover also.  SO, you have started your trek and keep walking.  It is so exciting to see the body making changes.  I am sorry for the years you lost, but I am so happy that you may have figured out a solution at last!  The body has been given an enormous ability to heal.

 

d

[GF in BC]

Liver disease, and I believe primary liver cancer, are linked to celiac disease too. I don't know if it is a strong link though.  Open Original Shared Link

 

Your son should probably be tested again and try the diet if he suspects gluten is a problem for him.

 

Best wishes

 

Wow! I had no idea about any link at all! His cancer was hepatoblastoma, no metastasis. More information I will provide to him.

 

You are such a wonderful source of information and you have no idea how grateful I am to have found this forum.

[GF in BC]

I relate to mourning.  It is okay to grieve.  I don't know why our situations  were only revealed years after the onset of symptoms.  I know I had a part in it.  My parents and doctors had a part in it.  BUT WE DID NOT KNOW!  All of the training we had couldn't tell us what was the problem. 

But now, I am better (After 30 years of symptoms).  I have hope for you to recover also.  SO, you have started your trek and keep walking.  It is so exciting to see the body making changes.  I am sorry for the years you lost, but I am so happy that you may have figured out a solution at last!  The body has been given an enormous ability to heal.

 

d

 

I had a bit of a setback today after a few weeks of being pain free. I ate yogurt that apparently isn't gluten-free (which I discovered after researching everything I ate this morning). The (safe) yogurt I used to eat isn't available in Canada so I'll have to make a point of hopping over the border to pick some up. 

 

The learning curve is a big one!

[kareng]

I had a bit of a setback today after a few weeks of being pain free. I ate yogurt that apparently isn't gluten-free (which I discovered after researching everything I ate this morning). The (safe) yogurt I used to eat isn't available in Canada so I'll have to make a point of hopping over the border to pick some up. 

 

The learning curve is a big one!

I have never see a yogurt with gluten. It said it contained wheat?

[GF in BC]

I have never see a yogurt with gluten. It said it contained wheat?

 

No, the company said they cannot consider it gluten free. As it was the only thing I ate today that was out of the normal range of things I was eating this week and I ended up with a big stomach upset, I can only assume this might have been the trigger.

 

From the website:  "Unfortunately, the company does not consider its products to be gluten-free, since "the natural system for stabilizing flavor might contain ingredients derived from gluten sources." The same statement applies t  o Oikos Greek yogurt ..." 

 

Oikos black cherry flavor is the yogurt I ate today. If it wasn't what caused the episode then I don't know what it was. I only ate fresh vegetables and salmon otherwise. 

[nvsmom]

It could be the milk. Lactose intolerance is common among celiacs because our lactase enzymes (needed to digest the milk sugar, lactose) are made on the intestinal villi which are often destroyed when we first go gluten free. Many of those who are lactose intolerant regain the ability to consume dairy/lactose after 6 months to a year gluten-free.

[GF in BC]

It could be the milk. Lactose intolerance is common among celiacs because our lactase enzymes (needed to digest the milk sugar, lactose) are made on the intestinal villi which are often destroyed when we first go gluten free. Many of those who are lactose intolerant regain the ability to consume dairy/lactose after 6 months to a year gluten-free.

 

I hope that's not the case for me. I eat Greek yogurt for its high protein value. I don't eat red meat, or much meat at all so it's a bit of a battle for me to get enough.  

[NoGlutenCooties]

No, the company said they cannot consider it gluten free. As it was the only thing I ate today that was out of the normal range of things I was eating this week and I ended up with a big stomach upset, I can only assume this might have been the trigger.

 

From the website:  "Unfortunately, the company does not consider its products to be gluten-free, since "the natural system for stabilizing flavor might contain ingredients derived from gluten sources." The same statement applies t  o Oikos Greek yogurt ..." 

 

Oikos black cherry flavor is the yogurt I ate today. If it wasn't what caused the episode then I don't know what it was. I only ate fresh vegetables and salmon otherwise. 

 

I eat Oikos Greek every day - usually blueberry but I get the black cherry if they're out of blueberry.  I've never had an issue.

[GF in BC]

I eat Oikos Greek every day - usually blueberry but I get the black cherry if they're out of blueberry.  I've never had an issue.

 

This is part of what I'm finding frustrating. Every person seems to be different so it's difficult to 'learn' what I might have reactions to just by reading other experiences. I love this brand of yogurt so I'll give it another try when I know I have time to deal with any stomach issues that may result.

 

There is an automatic mind-set I seem to have fallen into - any time I have a stomach ache, I'm attributing it to gluten. What if it's just a garden variety stomach ache - the type anyone may have? Is there such a thing? With so many decades of pain (hopefully) behind me, it may take me some time to adjust the thought process. 

[NoGlutenCooties]

This is part of what I'm finding frustrating. Every person seems to be different so it's difficult to 'learn' what I might have reactions to just by reading other experiences. I love this brand of yogurt so I'll give it another try when I know I have time to deal with any stomach issues that may result.

 

There is an automatic mind-set I seem to have fallen into - any time I have a stomach ache, I'm attributing it to gluten. What if it's just a garden variety stomach ache - the type anyone may have? Is there such a thing? With so many decades of pain (hopefully) behind me, it may take me some time to adjust the thought process. 

 

I don't think you're alone in this.  It seems that many people get diagnosed with Celiac and everything suddenly becomes attributable to gluten - understandable, but misguided.  Sometimes a stomach ache is just a stomach ache.  Or you could be reacting to some other ingredient in the yogurt.  Sometimes it's a matter of trial and error... which can be painful if it ends up making you sick again.  Frustrating, I know. 

[pricklypear1971]

This is part of what I'm finding frustrating. Every person seems to be different so it's difficult to 'learn' what I might have reactions to just by reading other experiences. I love this brand of yogurt so I'll give it another try when I know I have time to deal with any stomach issues that may result.

There is an automatic mind-set I seem to have fallen into - any time I have a stomach ache, I'm attributing it to gluten. What if it's just a garden variety stomach ache - the type anyone may have? Is there such a thing? With so many decades of pain (hopefully) behind me, it may take me some time to adjust the thought process.

It does take time to figure out YOUR reactions. And then they can change...

I have a rule that once means watch it, twice is probably gluten, and a third time I don't want to duplicate. But it's difficult to be able to narrow down and isolate one food....especially in the beginning.

If you keep reacting to random foods you may benefit from an elimination diet. If milk keeps popping up I'd start there. Sucks. I'm sorry.

Imagine my shock when after almost a year of popping Junior Mints (my gluten-free crutch) I became intolerant of most mint flavoring. Only took me two marathon and embarrassing d sessions to admit it .

[GF in BC]

It does take time to figure out YOUR reactions. And then they can change...

I have a rule that once means watch it, twice is probably gluten, and a third time I don't want to duplicate. But it's difficult to be able to narrow down and isolate one food....especially in the beginning.

If you keep reacting to random foods you may benefit from an elimination diet. If milk keeps popping up I'd start there. Sucks. I'm sorry.

Imagine my shock when after almost a year of popping Junior Mints (my gluten-free crutch) I became intolerant of most mint flavoring. Only took me two marathon and embarrassing d sessions to admit it .

 

Hah....not fair changing mid-stream. I guess this is going to be an ongoing adventure. I can't describe how happy I am not to have the debilitating D-dance on an almost daily basis, but I can see I will need to always be vigilant with anything I want to eat. 

 

I don't think you're alone in this.  It seems that many people get diagnosed with Celiac and everything suddenly becomes attributable to gluten - understandable, but misguided.  Sometimes a stomach ache is just a stomach ache.  Or you could be reacting to some other ingredient in the yogurt.  Sometimes it's a matter of trial and error... which can be painful if it ends up making you sick again.  Frustrating, I know. 

 

Trial and error - hopefully I don't make too many errors!  I have a feeling that adding to my frustration is the fact that after being 'sick' for most of my (long) life I want everything to be perfect now that I have discovered the problem. After all, I deserve it for making it through, don't I?  LOL  

 

I'm happy this is a busy forum with many people contributing - I appreciate the helpful responses I'm getting!

[nvsmom]

I think you are ahead of many people who assume all of their symptoms are from gluten.  Yes, it could be gluten but it could be some other sensitivity that is bothering you.  Being aware of that will help you figure it all out faster!  

 

For me, dairy used to give me the same raw stomach ache that gluten would. Then I found out, with help from this forum, that raw apples and pears give me a lot of pain and bloating too. Once you are sure all sources of gluten are out of your life, it gets easier to pick out other offending foods. A food and symptom diary helps too.

 

Try taking a lactase with your yogurt; that could help.

 

And yep, you deserve perfection for making it through!  But we usually take a few months to get there. LOL

[GF in BC]

I think you are ahead of many people who assume all of their symptoms are from gluten.  Yes, it could be gluten but it could be some other sensitivity that is bothering you.  Being aware of that will help you figure it all out faster!  

 

For me, dairy used to give me the same raw stomach ache that gluten would. Then I found out, with help from this forum, that raw apples and pears give me a lot of pain and bloating too. Once you are sure all sources of gluten are out of your life, it gets easier to pick out other offending foods. A food and symptom diary helps too.

 

Try taking a lactase with your yogurt; that could help.

 

And yep, you deserve perfection for making it through!  But we usually take a few months to get there. LOL

 

I like the diary idea as I already do that. I'm on Weight Watchers (1.8 lbs to goal!) and track like a maniac. I just need to add a column. LOL

I am going to give yogurt another try on Friday after work and see if I get the same reaction. If so, then I definitely will pick up the lactase  and try it out. It's definitely a whole new world of learning stuff out there! 

 

I have to say that since taking charge of this, I feel so much less depressed. I'm not Little Mary Sunshine yet....but maybe some day!

 

The helplessness of the situation sure took over every aspect of how I feel about myself. The social isolation is the one thing I am really strongly hoping to change. I've got a few months to work on this before good weather comes and I can join in on hikes and trips and such, just like a 'normal' person. Wow...who'da ever thunk??