Frustrated Newbie

[user853]

First, I apologize for the rambling that is about to happen...

I was diagnosed with celiac about a month ago. I do NOT have the classic celiac symptoms. My main compliant was random - but annoying - tingling in my body, mostly at night, but sometimes during the day. It took about a year to diagnose, as I had a lot of tests done (no vitamin deficiencies detected) and multiple months of chaning my thyroid medicine (as they thought that was the problem, which is it not). The only reason they tested for celiac was because I pushed for the test after I tried a few weeks of a gluten-free diet where the tingling disappeared.

I have not had a biopsy to confirm blood tests because two doctors feel that - since I have no gastrointestinal symptoms - the biopsy would be of little value. Ok?!

I am a vegetarian and eat a crazy healthy diet when I have control over my food. I rarely eat processed foods (including bread, bagels, etc.). So, my main source of gluten was pasta and beer (oh beer, how I miss you). So, gluten-free hasn't been too tough for me at home or lunch at work (I pack). But, I travel a ton and eat out a lot (due to my job). I am already the one who makes eating out with the group hard because I don't eat meat (and I live in an area where vegetarian options are not in every restaurant). Anyway... rambling...

My biggest questions concerns are this...

- Now that I have been gluten-free for about a month (minus a slip up or two eating candy with barely malt at a party, which I was only eating because it was all I could eat), I have noticed a few days where I am clearly not digesting all of my food well. I don't understand why this is happening. It is not every day, but enough to be weird. So, what is up with my stomach now?

- So far have had two family dinners where I said I would bring my own food and was totally denied (by my mother and my mother in law). One ended badly with a "good effort" gluten-free pizza, where my family got "confused" and they ended up getting the kids cheese pizza on the gluten-free crust (eww.. cheese pizza is the worst, not to mention how jealous I was of the super veggie no cheese pizza everyone else was eating). The other event my family member "couldn't deal" with my diet restrictions, so we had to go out to eat at their favorite restaurant even though I begged not to go there because I hate it and my kid is not great in restaurants and I actually - shocker - wanted to spend quality time with my family. Plus, my only option was a super tiny salad. And my kid was HORRIBLE when we were there. Anyway (rambling again)... how do I polietely bring my own food to gatherings?

- Why do people keep telling me that once I figure out what I can and can't eat and how much, I will be able to have some gluten again? I have told them "the only treatment is life long gluten-free diet". They look at me like I am crazy and tell me that they have a friend who has celiac but eats regular pasta, etc. I have even got, "So what, it is just some tingling! Have a beer!" My concern is that because I already have osteopenia (at age 35, possibly due to surgical menopause at age 33), so I don't want to screw up my bones. Are some people with celiac actually able to have small amounts of gluten?

anyway.. thanks for any thoughts and reading my rambling....

-U

[user853]

Also, I see my address shows up in my profile. I REALLY hope that is priviate. Is it?

[Jestgar]

Yes, only you can see that.

[Bubba's Mom]

First, I apologize for the rambling that is about to happen...

I was diagnosed with celiac about a month ago. I do NOT have the classic celiac symptoms. My main compliant was random - but annoying - tingling in my body, mostly at night, but sometimes during the day. It took about a year to diagnose, as I had a lot of tests done (no vitamin deficiencies detected) and multiple months of chaning my thyroid medicine (as they thought that was the problem, which is it not). The only reason they tested for celiac was because I pushed for the test after I tried a few weeks of a gluten-free diet where the tingling disappeared.

I have not had a biopsy to confirm blood tests because two doctors feel that - since I have no gastrointestinal symptoms - the biopsy would be of little value. Ok?!

I am a vegetarian and eat a crazy healthy diet when I have control over my food. I rarely eat processed foods (including bread, bagels, etc.). So, my main source of gluten was pasta and beer (oh beer, how I miss you). So, gluten-free hasn't been too tough for me at home or lunch at work (I pack). But, I travel a ton and eat out a lot (due to my job). I am already the one who makes eating out with the group hard because I don't eat meat (and I live in an area where vegetarian options are not in every restaurant). Anyway... rambling...

My biggest questions concerns are this...

- Now that I have been gluten-free for about a month (minus a slip up or two eating candy with barely malt at a party, which I was only eating because it was all I could eat), I have noticed a few days where I am clearly not digesting all of my food well. I don't understand why this is happening. It is not every day, but enough to be weird. So, what is up with my stomach now?

- So far have had two family dinners where I said I would bring my own food and was totally denied (by my mother and my mother in law). One ended badly with a "good effort" gluten-free pizza, where my family got "confused" and they ended up getting the kids cheese pizza on the gluten-free crust (eww.. cheese pizza is the worst, not to mention how jealous I was of the super veggie no cheese pizza everyone else was eating). The other event my family member "couldn't deal" with my diet restrictions, so we had to go out to eat at their favorite restaurant even though I begged not to go there because I hate it and my kid is not great in restaurants and I actually - shocker - wanted to spend quality time with my family. Plus, my only option was a super tiny salad. And my kid was HORRIBLE when we were there. Anyway (rambling again)... how do I polietely bring my own food to gatherings?

- Why do people keep telling me that once I figure out what I can and can't eat and how much, I will be able to have some gluten again? I have told them "the only treatment is life long gluten-free diet". They look at me like I am crazy and tell me that they have a friend who has celiac but eats regular pasta, etc. I have even got, "So what, it is just some tingling! Have a beer!" My concern is that because I already have osteopenia (at age 35, possibly due to surgical menopause at age 33), so I don't want to screw up my bones. Are some people with celiac actually able to have small amounts of gluten?

anyway.. thanks for any thoughts and reading my rambling....

-U

I'm so sorry you're having such a hard time. It doesn't help when your family takes something that's so life changing for you as "no big deal".

As far as bringing your own food, I'm afraid I'm no help there. Since being DXed nobody asks me over..and I don't go out much. There are a lot of people here with experience with that, so I hope they chime in?

A "little bit" of gluten is not OK. It's something you can never have again. If somone you know knows someone who's Celiac and does eat pasta, or whatever..either they are eating gluten-free pasta and since it looks the same as gluten-free, they are assuming? OR maybe their friend isn't Celiac, but is just avoiding gluten? OR their friend is very mis-guided in their diet and it will come back to bite them later? You will have to stand your ground on the NO gluten part of your life. Just a little gluten will activate your system and do damage.

A lot of us find that we need to take digestive enzymes to help break down foods. It's unfortunate that you didn't get a scope to see if there is villi damage. One can have it without the obvious digestive symptoms.

[user853]

Thanks! Anyone else with suggestions on bring food to family dinners?

[pricklypear1971]

Thanks! Anyone else with suggestions on bring food to family dinners?

Yes. Just pack your food and take it.

Make a gluten-free dish to share, or not if it isn't that kind of meal.

But you don't want to turn your back on family, and you don't want to get sick.

So take your own food and let them learn to get over it.

[user853]

Yes. Just pack your food and take it.

Make a gluten-free dish to share, or not if it isn't that kind of meal.

But you don't want to turn your back on family, and you don't want to get sick.

So take your own food and let them learn to get over it.

It is more about not hurting the feelings of the people who want to feed me but fail miserably.

[pricklypear1971]

It is more about not hurting the feelings of the people who want to feed me but fail miserably.

The kindest thing to do is to not put them through the effort.

You don't have to be rude, but the bottom line is that 95% of the time they will not prepare a safe meal or dish.

This is one of the hardest things to do as a Celiac. Every family is different - there are no rules about how to do it.

If they want to try perhaps a gluten-free cookbook or book about Celiac disease would be helpful as a gift??

In the end I think you just have to be polite but firm. And don't starve yourself in an effort to not offend.

[JNBunnie1]

A lot of peoples families react this way at first. They make you feel guilty for not eating their food even though there's no way for them to make food safe for you. Repetition and perseverance are the answer. If someone says to you that their feelings are hurt by your not eating their food, respond that your feelings are hurt by them trying to poison you. If they want you to be happy and healthy, they will have to put up with you bringing your own food. Period.

I would also advise you that the early osteopenia is very possibly a result of Celiac. It is a common symptom and that's how many people are diagnosed.

Any doctor that tells you a scope is no use because you don't have digestive symptoms is uneducated. To me, the blood test is proof enough, but they should have done the scope anyway. Celiac has the same effect on your immune system, your digestive system, and your risk for cancer down the road regardless of what set of symptoms you present with.

And no, you can't ever have 'a little gluten'. Remember, when people tell you that, that they have no education on this subject. It would be like getting on a plane with a truck driver in the pilot seat. Scary, right? Don't ask a stockbroker for information on a space shuttle. Make sure you're getting your info from poeple who know what they're talking about. Like us!

[pain*in*my*gut]

It is more about not hurting the feelings of the people who want to feed me but fail miserably.

Yep, this is a tricky subject. I have offered to bring something to every family gathering so that I will at least have SOMETHING to eat. I have also started inviting family over to my house where I do the cooking. It gives me a chance to show off my new culinary skills and spend time with family at the same time. If all else fails, your family will just have to get over it and you bring your own safe food. Period. Hurt feelings are much less harmful in the long run than a damaged nervous system, intestinal cancer, and/or other autoimmune diseases that can happen when you continue to consume gluten!!

It's interesting to hear from another person with celiac who suffered from tingling as their main symptom. I had a patch on my back that would tingle relentlessly before I went gluten-free. It totally disappeared after I stopped eating gluten. I accidentally ate gluten at a cookout this past weekend ( bratwurst was a beer brat...ugh), and the first symptom I had before the GI stuff hit me was the tingling in my back!

[raea2002]

Good luck! I too am a newbie and trying to figure all this out. It's not an easy thing and it's a hard concept for others to grasp. Just try to educate them the best you can.

[MitziG]

I have a very simple reply when people make an uneducated remark about how a little is ok, or how "so and So is Celiac and they can eat a little bit. I say sweetly, "Well, I would rather not end up having to poop in a bag when they cut my intestines out, but they might be ok with it..." Poop in a bag is generally an excellent conversation stopper.

[MitziG]

And in addition- no, a little is NEVER ok. Never, ever, ever. Ever. You may just have tingling NOW. But if you continue to assault your body with something it views as poison, your immune system WILL respond in increasingly damaging, possibly permanent, and even life threatening ways. Be firm, be matter of fact, and don't let someone who knows next to NOTHING (including some doctors!) convince you differently!

[user853]

Thank you everyone who responded! I appreciate your thoughts!! (even though it took me a week to respond.)

It's interesting to hear from another person with celiac who suffered from tingling as their main symptom. I had a patch on my back that would tingle relentlessly before I went gluten-free. It totally disappeared after I stopped eating gluten. I accidentally ate gluten at a cookout this past weekend ( bratwurst was a beer brat...ugh), and the first symptom I had before the GI stuff hit me was the tingling in my back!

I haven't heard of anyone else with this symptom either. I have had 4 doctors trying to figure out what my problem was with the tingling. I have appointments with 2 of them next month (for other reasons) and I am pretty sure they won't believe it!

[user853]

I would also advise you that the early osteopenia is very possibly a result of Celiac. It is a common symptom and that's how many people are diagnosed.

I guess I really think it is due to surgical menopause because I had a "normal to good" bone density before my oophorectomy (at age 32) and 2 years later had osteopenia. I didn't have my celiac symptoms those 2 years. But, who knows.

I wonder if my bone density will get better and/or stop getting worse now that I quit gluten.

[ncallier]

Thank you everyone who responded! I appreciate your thoughts!! (even though it took me a week to respond.)

I haven't heard of anyone else with this symptom either. I have had 4 doctors trying to figure out what my problem was with the tingling. I have appointments with 2 of them next month (for other reasons) and I am pretty sure they won't believe it!

In addition to gi symptoms, I've also had the tingling symptoms on and off for over 30 years, and I'm ONLY 50 (just recently turned 50). lol Anyway, I was told many things like: "You just have a nervous stomach." "You've obviously just cut the circulation off in your..." Back???? "You just ate something bad!!" etc.

Isn't it interesting that when dr's (and I'm sure teachers, which is what I am) get so defensive when challenged with problems we can't fix????

[ciamarie]

Thanks! Anyone else with suggestions on bring food to family dinners?

I have a twin brother, with our b-day in January. He wanted pizza for dinner, and obviously that wasn't going to work for me. So I told them I'd bring my own food, but I didn't feel like attempting to bring my own gluten-free version of pizza, especially with trying to warm it up when I got there, etc. So I brought some Asian rice noodles with a yummy spaghetti sauce and chicken. All I had to do was warm it up in the microwave. And for b-day cake, my SIL made a Hodgson Mill gluten-free yellow cake with chocolate frosting. It worked out pretty well.