How Do I Deal With This?

[PirateGen]

How do I get family and friends to take this seriously?

I've been unwell most of my life, ulcers as a baby, red, bumpy skin as a child, seizures as a teenager and young adult. In my early twenties, I had a sudden attack of severe stomach problems, cramps, diarrhea, vomitting and black urine. Having returned 6 months earlier from Africa, my doctor had me tested for parasites, but my results turned up nothing. I lost about 25 pounds suddenly and without trying. After that incident, my digestive system has never been the same. For years, people have accused me of being anoerexic, even though I have tried to explain that eating can make me really uncomfortable, it does not seem to register. Because I had so many symptoms, all the time, I rarely brought them up. I think there was a certain amount of denial on my part, too. I think I was scared that I had something very serious. Who would have known that because I didn't complain on a daily basis about how rotten I felt that now everyone seems to look at me as though I'm making this up. I just look at myself, and I can tell something is not right. Regardless of how I felt inside, I always looked stressed. My skin tone is greyish white. My eyes were always itchy, red and runny. I am at the very lowest of the acceptable range for weight to height.

I have also thought I was crazy as my symptoms seem to vary, there are a lot of them, but they seem to come and go in stages. I will have severe migraines, and/or nausea and/or cramps that lasts for several days and then it will go away. I didn't have acne as a teen, but in my 30s I developed a condition on my face, that eventually spread to my eyes, causing an eye twitch that got persistently worse and lasted six years. (I have found that tea tree oil helps control it, but it has not eliminated it entirely). It starts with a feeling that something is crawling on my skin, becomes itchy, turns into a bump with a white waxy centre, or clear fluid like a blister. It would also seem to take these bumps forever to heal. I don't know why, but I have always felt that my symptoms were all related and that if I could fix that one central cause, I would feel better.

After a visit to the hospital for what I thought was food poisoning, the Dr. suggested I get an ultrasound to check my gallbladder. I've been tested for diabetes, tuberculosis, HIV, the list goes on and on. I recently started seeing a new doctor and he suggested that I get tested for Celiac. I have a half sister who is Celiac. My blood test came back "inconclusive". Still convinced that I have Celiac, he asked me to do the 3 day stool test. It too, came back negative, but my Doctor still believes I am a classic case. My abdominal ultrasound showed no abnormalities.

Over the years, I have unknowingly limited most obvious gluten products. I've never been a big bread eater and although I will eat cookies and pastries, it is usually only when I am either starving, or at a social event. I think this could have affected my results, but I'm not sure. My Doctor asked me to continue on a gluten-free diet for the summer; to see if it has an effect. I have been gluten-free (as much as I possibly can avoid hidden gluten) for nearly a month now, and my skin seems to be clearing up. My stomach, which used to be the soundtrack to my life has fallen suddenly very quiet, and only grumbles occassionally now when I'm digesting food. I feel less "hazy" and more energized, but I know this can all be psychosomatic.

Back to my question. Without an official diagnosis, my family seems to think sticking to a gluten-free diet is unnecessary. I keep getting the "I didn't even know you were sick". Should I even bother?

[Smunkeemom]

A lot of people are too busy to notice much if you aren't constantly whining. I know, I get the "I didn't know you were sick" thing too, esp. since I used to just grit my teeth and get through it, after 19 years of people testing me for everything under the sun and then every time telling me "it must be anxiety" I just quit even trying to figure out what was wrong.

I don't know how much gluten you have to have in your system for the blood tests to come back pos. for a problem, but you should ask your doctor for a copy of the results, a lot of times a pos. gets pushed aside as "inconclusive". As far as I know celiac won't show up on an ultrasound, they have to go in with endoscopy to see the damage and even then they miss it.

If you give up gluten and feel better, then I think it's a safe bet that you are at least gluten intolerant, and a lot of people have had success getting their doctor to note that on the chart.

Some people will never understand, or even want to, and those are the people you should ignore. Even when my daughter was down to 7lbs at a year old due to celiac, I had family say "I eat bread everyday and I am fine, she will grow out of it, just feed it to her and her system will adjust"

I am glad you are feeling better gluten free, and if your family supports you that's great, and if not? At least you feel bettter.

[CarlaB]

I'm similar to you in that I thought a certain amount of pain was just normal, I was at the low end of my weight range, looked gaunt, etc. My tests were all inconclusive, but I tested positive at Enterolab. My family at home takes me seriously, and as a result of that, my friends do, too. My dad is happy to see me looking healthier and asks all kinds of questions. My mom suggested we order pizza the last time I was visiting her, so we did (we have six kids, so it seemed easy), then he took me out for something. She then went on to tell everyone that she cooked for me all week (not true, WE cooked together once, food that I bought), then went out and didn't even invite her and my step-father. Some people will never understand. In the end, it doesn't matter just so long as you're healthy.

Consider yourself lucky that you have a supportive doc. My GI never did believe I had a problem, even with the dietary response, so I have no doc helping me with this.

If you're feeling better, I'd stick to the diet. If you feel you need a diagnosis, you could try enterolab, they found my problem when the docs couldn't. I was glad to find out I wasn't crazy and to know whether I was just having a gluten problem or if I also had the autoimmune response, which I did. I didn't really care what others thought, I just needed to do what I needed to do to be sure I needed to stick to the diet.

Carla

[nettiebeads]

How do I get family and friends to take this seriously?. Without an official diagnosis, my family seems to think sticking to a gluten-free diet is unnecessary. I keep getting the "I didn't even know you were sick". Should I even bother?

To convince them? No. Don't waste your time and energy. Focus on yourself and getting better. What's the big deal to them if you eat wheat or don't? You do it because "for some reason I just feel better if I don't eat that.." is all they need. You're an adult, you can choose your diet. You are eating for your health, not theirs. You don't monitor what they eat so they don't get to monitor your diet. Anyway, you have enough problems with the general public and general food fare. Get the Triumph dining cards, (good investment) and stick to the diet. I'm sure that as you regain your health they'll come around. But stick to your guns! And feel free to come here with any questions and to vent. Lots of experience and knowledge here, most of it first hand. I'm healthier now that I've been here! Great bunch of people!

Annette

[PirateGen]

Wow, thanks to all of you for the support, I really appreciate it. For the first time, I actually feel like there are others who know what I've been going through.

I am pretty happy with my doctor, I have felt better as a result of his intervention, and apparently he has three other patients in the same situation. But, I do get the feeling that he is also just learning about it as well.

I was disappointed with the inconclusive results because I had been looking forward to finally having an answer. I live in Canada, so I don't know if there is anything like Enterolab here. I was also wondering if anyone could explain how the blood tests could be inconclusive - shouldn't any antibodies be positive and no antibodies be negative?

Thanks again, everyone.

[Smunkeemom]

Wow, thanks to all of you for the support, I really appreciate it. For the first time, I actually feel like there are others who know what I've been going through.

I am pretty happy with my doctor, I have felt better as a result of his intervention, and apparently he has three other patients in the same situation. But, I do get the feeling that he is also just learning about it as well.

I was disappointed with the inconclusive results because I had been looking forward to finally having an answer. I live in Canada, so I don't know if there is anything like Enterolab here. I was also wondering if anyone could explain how the blood tests could be inconclusive - shouldn't any antibodies be positive and no antibodies be negative?

Thanks again, everyone.

The results go something like <20 is neg. and if you had a number like 40 (like I did) they say they are negative (even though it's clearly pos.) or if you have a number like 150 they say they are inconclusive (even though it's clearly pos.)

my youngest actually got a pos. on a test where <20 is normal she got a 600.

That's why I say to get your actual test results, you can look at them and ask your doctor to explain, if you don't like his answer ask someone else who would know (like another doctor)

[tarnalberry]

You don't have to convince them of anything. You only have to follow the diet yourself. You are the only one who puts food into your mouth, and hence the only one who decides what food goes into your mouth, and hence the only one who needs to "be convinved". The rest simply have to accept your choice and respect it. If you were a vegetarian, would you need to "convince" them of that? Same deal - doesn't matter what they believe, as long as they respect your choices.

[I'm Hungry]

Greetings from the 'boro -

I found this website last week and have been using it as a guide for daily living since I have practically diagnosed myself as celiac. I have a plethora of symptoms and different allergies. I'm at the end of my rope - no doctors care to help (they think I'm a hypochondriac) and I've given up on them. My mother died the day I got an allergy test (July 1, 2005) of an unidentified stomach cancer - she was only 39. Not a single test showed that she had cancer but a doctor said that it was wrapped around her intestines when he attempted to perform a surgery on scar tissue in her stomach. So, needless to say, I'm a little worried and VERY sick of being sick! So...if you don't mind, please continue reading and I am happy to accept any and all information/help that you all may provide!

I started college in 2001 and was in the best health of my life. I worked out everyday and ate very healthy - all veggiess/lean protein/and fruit! I was 122 lbs and then one fateful day (in March) I began my battle with constipation, gained 15 pounds within 1 week (I had to wear my roomates clothes to class it happened so quick) and have gradually gotten more plump since - I'm at 160 now. I had severe pain in my stomach and tried everything to use the bathroom with no success. THe school infermery concluded that I have IBS, GERD, lactose-intolerance and stress - whoop-dee-do! This continues...

In 2004, I had a colonoscopy and an adenoma polyp removed. This started a ton of blood tests which were inconclusive for thyroid problems/chrones/celiac...I found a doctor that would sit and listen to me and actually care what I told her; she tested for thyroid and the test came back as me having a 9.04 tsh level - she called to tell me the day that I was moving to another city. I went to a new doctor once I moved who told me (after a blood test) that my tsh was fine and that I was too young to have a thyroid problem. Hah.

7/1/05 Prick test for allergies...the nurse joked that she was going to "place you (me) in a bubble and send you to Alaska!" I was allergic to everything that I tested for except for Chocolate. This included WHEAT, soy, dairy, melons, trees, grass, animals, etc.

I got married in April and the 16 weeks before the wedding, went wheat-free. I felt slightly better and was not as bloated as before. I tried adding it back during my honeymoon and got sick as a dog (I wanted to vomit but couldn't, instead, got diarrhea).

So...here I am today. I try to avoid wheat and lactose as they seem to triger my worst symptoms. I keep coffee and fiber at hand in hopes of a BM once a week. I am so bloated/distended that I barely fit into any of my clothes; even shirts that I bought last week won't fit now (and no, I haven't dried them).

I am miserable! I'm losing my mind, I can't remember anything, I can't stay awake throughout the day and I have no energy after work to even drive comfortably. If I eat ANYTHING consistently - as in more than 2x a week - I will become instantly intolerant for months. Bananas are a good example. If I have 1 banana, no repracutions, 2 bananas, still okay - 3rd banana within 7 days - my throat will swell, tongue will breakout and lips will swell. I keep a "geographic tongue", a constant skin rash of sorts, always have either hiccups/gas/burps - sometimes all 3 at once, migraines, joint pain, swelling in my hands/feet, I haven't had a period in 2 months and I'm not pregnant ( I tested)...the list goes on and on- I get hives from my own sweat!!! I'm really lost and feel helpless and hopeless.

I'm so sorry for such a huge post and I am sooooo grateful for any advice.

Thanks to you all for listening - anxious for a new lifestyle.

[Smunkeemom]

Greetings from the 'boro -

I found this website last week and have been using it as a guide for daily living since I have practically diagnosed myself as celiac. I have a plethora of symptoms and different allergies. I'm at the end of my rope - no doctors care to help (they think I'm a hypochondriac) and I've given up on them. My mother died the day I got an allergy test (July 1, 2005) of an unidentified stomach cancer - she was only 39. Not a single test showed that she had cancer but a doctor said that it was wrapped around her intestines when he attempted to perform a surgery on scar tissue in her stomach. So, needless to say, I'm a little worried and VERY sick of being sick! So...if you don't mind, please continue reading and I am happy to accept any and all information/help that you all may provide!

I started college in 2001 and was in the best health of my life. I worked out everyday and ate very healthy - all veggiess/lean protein/and fruit! I was 122 lbs and then one fateful day (in March) I began my battle with constipation, gained 15 pounds within 1 week (I had to wear my roomates clothes to class it happened so quick) and have gradually gotten more plump since - I'm at 160 now. I had severe pain in my stomach and tried everything to use the bathroom with no success. THe school infermery concluded that I have IBS, GERD, lactose-intolerance and stress - whoop-dee-do! This continues...

In 2004, I had a colonoscopy and an adenoma polyp removed. This started a ton of blood tests which were inconclusive for thyroid problems/chrones/celiac...I found a doctor that would sit and listen to me and actually care what I told her; she tested for thyroid and the test came back as me having a 9.04 tsh level - she called to tell me the day that I was moving to another city. I went to a new doctor once I moved who told me (after a blood test) that my tsh was fine and that I was too young to have a thyroid problem. Hah.

7/1/05 Prick test for allergies...the nurse joked that she was going to "place you (me) in a bubble and send you to Alaska!" I was allergic to everything that I tested for except for Chocolate. This included WHEAT, soy, dairy, melons, trees, grass, animals, etc.

I got married in April and the 16 weeks before the wedding, went wheat-free. I felt slightly better and was not as bloated as before. I tried adding it back during my honeymoon and got sick as a dog (I wanted to vomit but couldn't, instead, got diarrhea).

So...here I am today. I try to avoid wheat and lactose as they seem to triger my worst symptoms. I keep coffee and fiber at hand in hopes of a BM once a week. I am so bloated/distended that I barely fit into any of my clothes; even shirts that I bought last week won't fit now (and no, I haven't dried them).

I am miserable! I'm losing my mind, I can't remember anything, I can't stay awake throughout the day and I have no energy after work to even drive comfortably. If I eat ANYTHING consistently - as in more than 2x a week - I will become instantly intolerant for months. Bananas are a good example. If I have 1 banana, no repracutions, 2 bananas, still okay - 3rd banana within 7 days - my throat will swell, tongue will breakout and lips will swell. I keep a "geographic tongue", a constant skin rash of sorts, always have either hiccups/gas/burps - sometimes all 3 at once, migraines, joint pain, swelling in my hands/feet, I haven't had a period in 2 months and I'm not pregnant ( I tested)...the list goes on and on- I get hives from my own sweat!!! I'm really lost and feel helpless and hopeless.

I'm so sorry for such a huge post and I am sooooo grateful for any advice.

Thanks to you all for listening - anxious for a new lifestyle.

I am sorry you have been sick for so long, hopefully you will feel better soon.

My best advice?

okay, first print out this list, and take it everywhere you go, read the ingredients on EVERYTHING, if you can't read the ingredients, and it's not fresh fruit or veggies without syrup or seasoning, then don't eat it. Try that for a few weeks and see if you feel better. If not, you might want to go on the elimination diet, I haven't done it, I hear it sucks, but eventually you figure out why you are sick then everything is better.

[brendygirl]

I'm similar to you in that I thought a certain amount of pain was just normal, I was at the low end of my weight range, looked gaunt, etc. My tests were all inconclusive, but I tested positive at Enterolab. My family at home takes me seriously, and as a result of that, my friends do, too. My dad is happy to see me looking healthier and asks all kinds of questions. My mom suggested we order pizza the last time I was visiting her, so we did (we have six kids, so it seemed easy), then he took me out for something. She then went on to tell everyone that she cooked for me all week (not true, WE cooked together once, food that I bought), then went out and didn't even invite her and my step-father. Some people will never understand. In the end, it doesn't matter just so long as you're healthy.

Consider yourself lucky that you have a supportive doc. My GI never did believe I had a problem, even with the dietary response, so I have no doc helping me with this.

If you're feeling better, I'd stick to the diet. If you feel you need a diagnosis, you could try enterolab, they found my problem when the docs couldn't. I was glad to find out I wasn't crazy and to know whether I was just having a gluten problem or if I also had the autoimmune response, which I did. I didn't really care what others thought, I just needed to do what I needed to do to be sure I needed to stick to the diet.

Carla

Carla, were you on gluten for the Enterolab test?

B

The results go something like <20 is neg. and if you had a number like 40 (like I did) they say they are negative (even though it's clearly pos.) or if you have a number like 150 they say they are inconclusive (even though it's clearly pos.)

my youngest actually got a pos. on a test where <20 is normal she got a 600.

That's why I say to get your actual test results, you can look at them and ask your doctor to explain, if you don't like his answer ask someone else who would know (like another doctor)

WOW! My number was 40 and my test was negative after I'd been off gluten for 6 weeks and only put back on for 7 days before the test. Good to know your case.

[Ursa Major]

I live in Canada, so I don't know if there is anything like Enterolab here.

Check out this post for the answer to your Enterolab question:

Open Original Shared Link

[Nancym]

Well, if you're an adult you don't need your family's understanding or approval, you just gotta do what you know you gotta do. Most of us don't get the sort of understanding we'd like from our families but trudge onward regardless. :\