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Depressed

Laurelf

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Laurelf Explorer
Laurelf
Posted

I went to a breakfast restaurant yesterday and asked for only eggs, bacon and home fries. The waitress assured me there was no flour in the fries. Less than an hour later, I was running to the bathroom with bad cramps and got the usual yellow diarrhea and the DH that had been on my stomach got really itchy. I didn't realize how sensitive I have to be to cross contamination now. My son has food allergies and I am very careful about cross contam with him but I thought maybe I could be more relaxed about gluten.

To make matters worse, some of my family and friends have said that since I haven't been officially labelled celiac yet despite the mountain of evidence (the DQ8 gene, DH, flattened folds seen on the scope, high lymphocytes and "no significant villous atrophy" in the biopsy, IgA and fecal fat in stool) and since my primary care's nurse refuses to call me celiac because my blood is negative, that I am crazy for going gluten free. My primary care nurse actually told me I should see a therapist for insisting I have it and my friend who is a nurse said I don't have it because the atrophy was not significant!

I just want a clear diagnosis and a clear plan so I can feel better and have my family and friends understand. For example, my in-laws are insisting we go out to eat for Thanksgiving even though I won't be able to eat the gravy or the stuffing and who knows what else. Because i can't say "Look here it says celiac in my record" I feel that I have no leg to stand on.

Sorry, but it was almost easier dealing with my son's food allergies because he had clear immediate reactions and a clear diagnosis and lots of sympathy. I have been so sick for so long that I think people think "there she goes grasping at straws again".

Sorry but I had to vent. Thanks for listening.

Laurel

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cat3883 Explorer
cat3883
Posted

In my book it sounds like celiac to me. Let's face it, most people know nothing about celiac disease including doctors and nurses. As for family and friends celiac disease is very confusing to them. They think you can go on this diet for a while then everything heals and you can eat gluten again. I was diagnosed about 11 months ago. I had both genes and no villi but I am 50 years old and have struggled all 50 years. I don't know how long you have been struggling but maybe your case was caught before the villi were destroyed. And as for the blood tests alot of people test negative. I dont even discuss my celiac disease diet with family and friends as they just don't get it. My sister-in-law has a PHD in nursing and she asked me if I can eat whole grain bread!! Just stick to a gluten free diet and you will get better. Find a gastroenterologist that you can form a good relationship with. To heck with what people think or say. Why don't you just tell your family and friends you have been diagnosed with celiac disease. Maybe that will help. Good luck to you.

Ahorsesoul Enthusiast
Ahorsesoul
Posted

Laurel,

They aren't going to believe your even if it is in your medical record in huge red letters and it's tattooed on your forehead. You know you have it from the tests done and your reactions. It is not important why you can't eat gluten, you know what happens when you do.

Stand up for yourself like you stand up for your son. You know you have found what's been bothering you and that if you stay off gluten you feel a whole heck of a lot better. You can do this. Stand tall and proud that you know more than most doctors (and apparently your PA and nurse friend).

Roda Rising Star
Roda
Posted

While my mother in law believes that I have this disease, I think she thinks I'm a bit over the top. We had a recent halloween party for over 40 kids/adults and I couldn't afford to do the whole party gluten free. There was myself and three others that needed gluten free food so I made seperate stuff for us. Anyway I was constantly going behind her cleaning since the main entres were not gluten free. I think I scrubbed down my kitchen three time. She kept telling me about her sister in laws mother who has celiac and how well she is doing. She also went on to say that she eats cake and things at birthday gatherings and she never gets sick from it. So this has got my MIL thinking that you can cheet once in awhile and that you don't have to be super careful about cross contamination and it's no big deal. I tried to explain it to her but she only partly gets the crosscontamination thing. Ahorsesoul is correct. While my official diagnosis has made it easier for people to believe I have a condition, they still don't get whats involved.

frustrated09 Newbie
frustrated09
Posted

I've heard that testing doesn't always give a yes or no answer. My blood was negative and I didn't go much farther then that. I didn't want to pay for a biopsy. There's nothing the docs can do except be on a gluten free diet. My family has been fairly supportive but then they've seen the change in me when I have a good gluten free day and I can be fun with energy on those days.

-self diagnosed gluten/dairy intolerant.

Wolicki Enthusiast
Wolicki
Posted

We should come up with a "Celiac.com Approved" stamp for med records and a button to go with it. Med files with this stamp and anyone wearing a button will never be given any crap about anything ever again from medical professionals or well meaning family. Don't you all think that would be great?

Ahorsesoul Enthusiast
Ahorsesoul
Posted
We should come up with a "Celiac.com Approved" stamp for med records and a button to go with it. Med files with this stamp and anyone wearing a button will never be given any crap about anything ever again from medical professionals or well meaning family. Don't you all think that would be great?

I'm in line for the stamp and button!

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Laurelf Explorer
Laurelf
Posted
  • Author

I'll take a stamp, too! Why is it so hard for people with celiac to be treated fairly? It sounds like a lot of people here have experienced problems with people believing you or taking you seriously. What is it about celiac that makes people react that way?

Thanks for the motivation Ahorsesoul and cat3883. It's easier to stand up for my son than it is for me sometimes.

As for over the top Roda, people have been thinking for years that I've been over the top with my son as I get nervous at playgrounds, birthday parties, etc and have made decisions to keep him away from certain things (like baseball games with peanuts everywhere). With him, I can stand up and say I'm his mom - I know what's best for him because I've seen the results of a reaction and I don't care what people think - I look at it as saving his life. With me, I haven't yet developed that attitude maybe because it's harder to justify being over the top when people don't understand celiac. Am I making sense?

Also, does anyone have a medic alert bracelet for celiac? I have one because of my allergies but I wonder if I should add celiac to the bracelet.

Thanks everyone! What a great group of understanding people,

Laurel

Swimmr Contributor
Swimmr
Posted
I'm in line for the stamp and button!

How bout an easy button for us with intolerances and Celiac and us who've diagnosed ourselves!

easy-button.webp

ang1e0251 Contributor
ang1e0251
Posted

Love it!!!

Ahorsesoul Enthusiast
Ahorsesoul
Posted

So I'll take a stamp, a pin and an easy button. And maybe that hardwood baseball bat for anyone that doesn't believe the stamp, pin or button.

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