New To Celiacs-need Advice

[Linzee]

Hi. I'm 24 and for a year I have had hives and rashes that would come out of no where, mostly on my legs. Since my pre teens I was daignosed with IBS, and always was bloated but just recently the bloating, cramps, and hives got worse. I went to a bunch of doctors that couldn't help until I went to an allergest that tested me for Igg and said I came up weakly positive for it, so he believes with the test and all my symptoms ( I also have experienced unusual fatigue and had swollen lypmhnodes that weren't cancerous) that I have the beginnings of celiacs.

So For the past 2 weeks I have tried to be gluten free and it is so hard. I practically started crying last week just trying to cook myself a meal! But anyway my question is does my story sound familiar to any of you, are these symptoms, especially the hives a sign of celiacs? I guess I'm just in denial about it, but I'd like to hear from others about their symptoms and how they deal with being gluten free. ( Alot of the gluten free foods I have tried already don't tatse good at all!). I hope you all can give me some advice. Thank you : )

[elye]

Hi there, and welcome to the board!

You've come to the right place.

You'll find so much information on this sight, and there are a lot of smart people on here who will answer probably any gluten-related question you might have. There is quite a steep learning curve with the diet, but it gets easier, I promise! Give yourself time - - a dietary change like this one will take a while, and eventually you will be eating gluten-free without even thinking about it.

The hives you've described are not only a symptom of celiac, they are an irrefutable diagnostic tool. The condition is called dermatitis herpetiformis. There is an entire section in this forum on DH, and many useful websites that you can google.

Like I say, stick around this message board - - there is tremendous advice and suppoprt here.

[Welda Johnson]

Hi,

As I've said before on this board, I'm now 63 and have had symptoms of Celiac since I was 8. Mine appear as asthma and the inability to breathe--wheezing, coiughing, bronchitis, then pneumonia, etc. as well as stomach and digestive issues. For many years I had to find answers on my own, but five years ago I learned that what I had was called Celiac. That's when I got on this site and began eliminating most processed foods. Before that I had eliminated all grains, milk & dairy on my own. After getting on this site I eliminated products with casein, whey, maltodextrin and modified food starch (corn is usually okay). I also had to eliminate egg whites and yeast. Keeping a simple diet while doing food eliminations is a good way to go, and when you start feeling better you know you're on the right track. It sounds as though you have Dermatitis Herpetiformis (I think that's what it's called). Aramgard on this site has had that for years, so maybe you could connect with her. Feel free to contact me at welda@att.net any time you want. Best wishes. Welda

[A-Swiss]

Well, I am 2 weeks into mine and I know how you feel. I have always been active and into sports, so that afforded me the ability to pretty much eat anything I want. With that freedom, I celebrated every food possible. With a nice slap in the face (and some severe pain), I learned that gluten rules much of the free world (at least the stuff that I thought tasted good!). Does it suck, yes. Can you go back, no. Does this mean that you'll never find food happiness - no. No one will EVER tell me this transition is/was easy, but I also realize that I can make it harder on myself by looking over my shoulder. It's all trial and error and most of the easy stuff will certainly taste worse than the original stuff. However, the alternative of constant pain, health issues, and lack of energy pretty much sold me on playing for this team We seem to be here for each other, so let me know what I can do to help. We noobs have to stick together!

[Linzee]

Thanks everyone for your replies! I feel a lot better now that I know these symptoms are very standard for someone with celiac's. It's nice to know that people still actually care about others!

[kera87]

I'm 21 so I definitely understand your feelings, it's really tough and you have every right be be upset at times. I've been at this for 5 months but I've had symptoms for years before it. When I went to the doctor the end of December, I finally found out I had celiac the day after Christmas. Of course I cried (and ate the rest of the christmas cookies so I could have one last bit of gluten, and paid for it later haha), but it was a relief in a way. A week later my symptoms were almost gone and the only time I have them is when I accidentally somehow get gluten in my system. I live in an apartment with 4 other girls so it unfortunately happens a lot (not cleaning silverware or pots well enough probably).

Your symptoms are right on point, the rash (Dermatitis Herpetiformis) sometimes accompanies celiac, and I actually sometimes get it when I accidentally have gluten. I used to get upset while making meals, but you're going to get used to it before you know it. I almost start crying when I go out to eat with friends occasionally, that is probably what bothers me the most.

A lot of the foods don't taste well, but there are so many great ones I've found, I even found great bagels! Wholefoods and local heathfood stores will have tons of options, I also order food online a lot.

As overwhelming as it might feel, you're going to feel better and that is going to be the greatest feeling ever, I know it was for me!