Feeling Dimissed, Frustrated And Alone

[Michi8]

I had my gastroscopy yesterday, and it went well (though I have some stomach pain today.) I found out, however, that the dr only took two biopsies. One was from my stomach and one from my duodenum. I had talked to the nurses about how many biopsies the dr would take and I was told "a few." I didn't really have opportunity to talk to the dr ahead of time (she was booked with back to back procedures all day.) I am soooo disappointed that I waited 3.5 months to have this testing to only have two samples taken.

Everything apparently looked healthy, and the dr left notation that all was normal. I'm pretty sure that the two biopsies will come back normal too. So it leaves me back at square one again.

I had a biopsy done for DH about a year ago, but the dr took the sample from the wrong spot. So I have no confidence that the results were accurate. All my labs have come back normal, except for iron which has been on a steady decline. I started taking iron supplements, which seemed to have helped my energy a little bit, but hasn't helped at all with my hair loss, insomnia, moodiness, feeling cold, IBS, lactose intolerance, skin issues, libido, etc, etc.

Next labs will be done in January to test my iron levels and to do a thorough testing of thyroid again. In the meantime, I want to start the gluten-free diet to see if it makes me feel better.

I had really hoped that there would be some signs of intolerance though...as much for my kids as me. I wanted to know if there was reason to pursue further investigation of their health issues (1 son has chronic constipation, stomach upset and occassional incontinence, 2nd son is very thin and very sensitive, and daughter has chronic eczema and the beginnings of asthma.) My husband needs to be tested too (he's got multiple digestive symptoms, as does his family) but I know he will resist.

I am so frustrated and disappointed. I really feel let down by the medical system. I know this isn't all in my head. I just want concrete answers so I can start feeling normal. And I want someone to talk to about this...noone is home right now, and DH is too busy at work.

Michelle

[Nantzie]

I know how you feel. All my testing came back negative too.

What I ended up doing was planting my feet and doing the gluten-free diet this past January no matter what ANYONE said. And a LOT of people in my family said a LOT of horrible things to me and about me, to my face and behind my back. It was really rough. But I started feeling better really quickly. It was a pretty dramatic change too.

Now, less than a year later, those same family members are paying attention to what they put in things they cook for family dinners, etc. so they can tell me if I can eat it. Yesterday, my FIL even made sure he kept some recipe books out because he couldn't remember if we could have cornstarch.

It ended up working out better than I ever expected, healthwise AND family-wise.

Sometimes you just have to plant your feet and not budge. Other than them holding you down and shoving food down your throat, nobody can make you eat anything you don't want to eat. It isn't easy being the only gluten-free person in a gluten-filled house, but it's totally worth the inconvenience.

I hope you start feeling better soon.

Nancy

[Michi8]

Thanks, Nancy. It's really nice to hear that others have BTDT. It would be nice to have a medical diagnosis to back up my dietary change, but, really, what's one more thing to make extended family think I'm off my rocker? I'm already considered the family hypochondriac who is over-the-top allergic to everything anyway.

I just got off the phone with DH too...he is 100% supportive of me going on the gluten free diet, and repeated to me that the testing can be inaccurate. He's also supportive of dietary changes with our son to get to the bottom of his GI issues. I feel a lot better having talked to him.

Michelle

[2kids4me]

I find it interesting that someone can be vegetarian - no one bats an eye - a vegan - or following some crazy fad diet of grapefruit all day - or remember the ketone diet?, all the rage despite the fact oyu were starving and thus the ketones.

So someone finds out that eliminating gluten and/or other foods (without an "official diagnosis") helps correct health issues, improves their state of mind - and people roll their eyes, try and undermine attempts at gluten free. Its nuts!

Even WITH a diagnosis and helath improvements in both kids, I have family members (one is a nurse) who ahve earmarked me as fanatic and "how can a crumb hurt them, dont you think that's taking a diet a bit far?"

I dont live with my sister, and my froends dont have to follow the diet. People in my life who judge without knowledge or fail to have an open mind - well, I will be polite but not "close" to those people.

I do what is best for myself and my family.

If going gluten free helps anyone - go for it! This forum has tons of recipe links and tips and ideas to help get someone started.

Sandy

[Michi8]

I'm afraid family wouldn't have much nice to say about going vegetarian...especially vegan...they roll their eyes at organic too. But, I've never seen them purposely undermine a diet...they just wouldn't think about it when making food for everyone. I'll never forget the time my BIL made dinner at the cabin...with peanuts!...I was still allergic at the time, and devastated that they were so insensitive (didn't help that I was only a few months postpartum at the time and an emotional basketcase!) But I know it was simply that, since he has no allergies, he simply didn't remember mine...but, after that incident, he doesn't forget now!

Thanks for the encouragement to go gluten free...now I've got to actually do it! Yikes!

Michelle

[PetaC]

Hi,

I have only just joined the forum, I dont really have any advice for you except to say that I am exactly in your position, I had my gastroscopy on Monday and found out on Friday that everything was normal and I (according to the results) dont have celiacs - I was absoloutely shattered, I cried and cried because I guess I really feel i have this and want a diagnosis for what I have - more so people dont think I am making it up, that i am tired and nauseous, etc - I know I am sick but it just feels like other people dont really believe me! Anyway, i came to grips with it and have decided to start the diet, started on Friday, dont feel any different yet but i know it is going to take time, I had to go to dinner last night for my friend's b'day(lots of people who didnt know me) and it was of all places, held at a pizza and pasta shop, I nearly caved - it was really hard, especially when you dont even know for sure it makes you sick - would be easier to comit to if i had a diagnosis, but ended up just having rice with chicken(only because i still have to reasearch what i can and cant eat - i know it is going to take some time before i feel confident eating out!) , got some very funny looks, and a couple of people thought i was one of those people who diets when they dont need to - had to explain the whole i think i have this disease but all my tests came back normal, just felt really uncomfortable. But anyway, I know I have to do this, I want to feel better and return to the person i used to be, I know it will be worth all the uneducated comments and looks if i finally start to feel better. I know its not really advice, like i said i am not in a position to give advice because i still dont know if i even have celiacs or gluten intolerance - just want you to know that i totally know how you feel and i felt better reading your story, knowing that there are other people with negative results and feel the same as me.

[Ursa Major]

Michelle, I understand your frustration. The biopsy from your stomach is useless for diagnosing celiac disease, and ONE of the duodenum is almost as bad as none. Many doctors claim that things look fine (to the naked eye, of course), while the lab finds damage to the villi consistent with celiac disease. So, just because your doctor thinks things look fine, doesn't mean they ARE actually fine. But with taking only one biopsy, it is not likely you'll get a positive diagnosis, even if there is damage.

You can still try Enterolab. That's always an option, even if you go on the gluten-free diet already. And that is exactly what I would recommend, both for you and your children. In fact, it would be great if you would be able to make the whole household gluten-free. That way you'll be able to avoid cross-contamination, and you will test the whole family at once. And yes, trying the diet is a valid test.

Many scientists feel that damaged villi is just one of many possible symptoms of celiac disease, that it can manifest in many different ways. And that concentrating just on the villi for diagnosis is ridiculous.

I hope that the diet will work for you and that you'll feel better soon!

[Michi8]

Thanks, Ursula. I was disappointed to hear the dr "wasted" one of my biopsies on my stomach...especially if everything looked normal there. Guess I just have to cross my fingers that the other biopsy shows something useful.

Enterolab is intriguing, but out of reach finacially at this point. If anything, it would probably be more helpful for my brothers and my father to get the celiac panel done...especially my brothers given they have very strong GI symptoms. My DH should as well, given his Scandinavian heritage and the GI symptoms he and his extended family have. However, they all are resistant.

I am getting set to officially start the diet on Monday. I've been invited to join my parents for lunch at Olive Garden tomorrow...it's my one last gluten-filled meal...haven't been there for a long time, and probably won't be going back anytime soon.

Michelle

Hi,

I have only just joined the forum, I dont really have any advice for you except to say that I am exactly in your position, I had my gastroscopy on Monday and found out on Friday that everything was normal and I (according to the results) dont have celiacs - I was absoloutely shattered, I cried and cried because I guess I really feel i have this and want a diagnosis for what I have - more so people dont think I am making it up, that i am tired and nauseous, etc - I know I am sick but it just feels like other people dont really believe me! Anyway, i came to grips with it and have decided to start the diet, started on Friday, dont feel any different yet but i know it is going to take time, I had to go to dinner last night for my friend's b'day(lots of people who didnt know me) and it was of all places, held at a pizza and pasta shop, I nearly caved - it was really hard, especially when you dont even know for sure it makes you sick - would be easier to comit to if i had a diagnosis, but ended up just having rice with chicken(only because i still have to reasearch what i can and cant eat - i know it is going to take some time before i feel confident eating out!) , got some very funny looks, and a couple of people thought i was one of those people who diets when they dont need to - had to explain the whole i think i have this disease but all my tests came back normal, just felt really uncomfortable. But anyway, I know I have to do this, I want to feel better and return to the person i used to be, I know it will be worth all the uneducated comments and looks if i finally start to feel better. I know its not really advice, like i said i am not in a position to give advice because i still dont know if i even have celiacs or gluten intolerance - just want you to know that i totally know how you feel and i felt better reading your story, knowing that there are other people with negative results and feel the same as me.

Hi PetaC,

I totally get the dilemma of starting and sticking with the diet with inconclusive results. Although, I'm beginning to think that there's likely a much higher rate of gluten intolerance in North America than is even now being reported...and going gluten free may just be more healthful anyway.

I'm worrying, too, about comments when I am eating differently than everyone else. I hate the feeling of divulging too much info...gives others the impression that it's okay to ask me personal questions and to pass judgement when it's not. I think I have to come up with a short and sweet answer to stop enquiries without getting into personal details (turn the tables and make those nosey people uncomfortable instead.)

Michelle

[darlindeb25]

Peta and Michelle--for starters, you need to stop thinking of it as a diet and begin thinking of it as a lifestyle. Until family and friends understand, sometimes it is easier for them to understand allergic as opposed to intolerant. People know that an allergic reaction can kill you, they do not understand that an intolerance can make you wish you were dead. They have never walked a mile in our shoes, they can't understand.

I have worked for 2 yrs in the same office with the same group of people and only 2 or maybe 3 of them understand me and realize the importance of being very careful around me. The doctor's wife Stacey was tested for celiacs several years back and is lactose intolerance--she totally understands, as does her hubby, the doctor. I have been celiac since the day we all met, so it's not something I surprised them with and still, to this day, some will still say, "Just one little bite can't hurt you!" I have to constantly be on guard, watching that they don't sit donuts, cookies, pastries on my desk--I have gone as far as to ask them if I ever sit poison on their desks and they just don't get it.

My family is very understanding, I also have a sister and father with celiacs. At first my kids didn't understand it as well, but they have learned over the years. It's been 5 yrs now and I am not a diagnosed celiac, I just know I have it. I was sick for over 25 yrs with no answers. Sometimes we can't expect answers, we have to make our own answers. Only you can decide and do it for you.

[lonewolf]

I can totally relate. I was "diagnosed" with food allergies over 10 years ago and my in-laws were very skeptical and thought I was a huge hypochondriac. (We live within 5 miles of my dh's parents and 3 siblings and families.) After I recovered from the debilitating arthritis, they started being a little nicer, but there were still comments behind my back about how "ridiculous" I was being. They thought that going to a naturopath was really weird and not accurate at all and that I should just find medications to help me.

Friends were happy that my health was getting better, but thought my methods were strange and kept telling me how hard it must be. My mom was really the only supportive one.

I had been told that I would get over the food allergies if I avoided the offending foods. Again, my in-laws kept insisting that I should start eating all those foods again since it had been so long. I would try, have a reaction and then decide it wasn't worth it. They just knew I was a hypochondriac and would roll their eyes at me. I finally discovered information about Celiac last October and went gluten-free soon after and improved even more. (That was when I gave up hope of ever getting gluten and dairy "back".)

Fast forward to now. They see how healthy I've gotten, they've heard about Celiac in the news and my SIL who's a nurse has had several patients (and a co-worker) with Celiac in the past year. A cousin was also officially diagnosed.

They think I'm going a little overboard to have 2 of my kids gluten-free, after negative tests, but they aren't quite so critical. (It helps that the kids are on board and don't want to eat gluten.)

Bottom line - you have to do what's best for you and your family. No one else cares about your health as much as you do and it's worth fighting for.

[CantEvenEatRice]

The more I research online and read through this board, the more it seems like Celiac and gluten intolerance can affect entire families. In my case, my mom and dad, brother, me and my son all have it. My brother and I got positive blood tests, but my parents and son got positives from Enterolab. My husband doesn't have any symptoms. Most of all though, the positives come from seeing whether or not a change occurs when you try the diet. My son is only 22 months, but I definitely noticed a change when I stopped the gluten and dairy. It it difficult to explain to others about Enterolab so I just always say that his bloodwork was positive. And if you do the diet and have great results then you can call yourself a Celiac. You really aren't obligated to explain everything to everyone (though most will ask!). I have just found that a lot of people want to know how you found out and sometimes just saying "through bloodwork" is the easiest thing. As for family...I have found that most will try hard to cook things according to the diet, but always be careful of cross contamination. Everyone means well, but unless you live with Celiac everyday it is hard to think of the small things (such as a spoon from gluten item being transferred to non-gluten item).

I would highly recommend trying the diet with your children. I know it can be hard, but I went undiagnosed for 25 years and wish I would have been put on the diet when I was a child (but 5 million doctors didn't know what was wrong). I have a whole bunch of issues now (hypothyroidism, osteoporosis, chronic fatigue) and I am only 28. I feel that the sooner one can get off of gluten, the less damage is done. Best of luck to you!

[oceangirl]

The more I research online and read through this board, the more it seems like Celiac and gluten intolerance can affect entire families. In my case, my mom and dad, brother, me and my son all have it. My brother and I got positive blood tests, but my parents and son got positives from Enterolab. My husband doesn't have any symptoms. Most of all though, the positives come from seeing whether or not a change occurs when you try the diet. My son is only 22 months, but I definitely noticed a change when I stopped the gluten and dairy. It it difficult to explain to others about Enterolab so I just always say that his bloodwork was positive. And if you do the diet and have great results then you can call yourself a Celiac. You really aren't obligated to explain everything to everyone (though most will ask!). I have just found that a lot of people want to know how you found out and sometimes just saying "through bloodwork" is the easiest thing. As for family...I have found that most will try hard to cook things according to the diet, but always be careful of cross contamination. Everyone means well, but unless you live with Celiac everyday it is hard to think of the small things (such as a spoon from gluten item being transferred to non-gluten item).

I would highly recommend trying the diet with your children. I know it can be hard, but I went undiagnosed for 25 years and wish I would have been put on the diet when I was a child (but 5 million doctors didn't know what was wrong). I have a whole bunch of issues now (hypothyroidism, osteoporosis, chronic fatigue) and I am only 28. I feel that the sooner one can get off of gluten, the less damage is done. Best of luck to you!

It occured to me during Thanksgiving dinner when several well-intentioned family members were urging me to try the pecan pie, amongst other things, and eyebrows were being raised at my pre-made meal, that if one is a diabetic it seems most people don't urge you to have a few snickers bars or suggest you knock off the insulin shots for the day. You know? If someone has cancer it seems they're rarely questioned or mocked about food choices. It's really bizarre. Unfortunately for me, it is my Karma to have an issue with food since I set myself up with my family years ago almost dying at 17 from anorexia. Now I'm cursed to have eyes watching what I do and don't eat I guess for the rest of my life. Never mind that I look and feel and act mostly healthy (without gluten) and am almost 50!

I guess all we can do is soldier on, eh, and call as little attention to it as we can with those who just won't get it! Good luck to all!

lisa