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Mourning The Loss Of Gluten?


firefightersgal

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firefightersgal Apprentice

I've only been gluten-free for 2 1/2 days, so I'm very much a newbie. I'm awaiting my blood test results for celiac, but my doctor confirmed that I have dermatitis herpetiformus.

I had no idea that food meant this much to me before. I'm very sad about not being able to eat whatever I want. I was a bit relieved when I went to Walmart today and found that they have many gluten-free things at a more affordable price than the health food stores or another grocery store.

Please tell me this is a normal part of the process. I know that a lot of my health problems will be taken care of by avoiding gluten, and that will surely be a small price to pay.


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kareng Grand Master

I felt sad at first and I have never been a huge bread eater. What made it more fun was to find products and food I might not have tried before. We went to a Persian restaurant and it was good. Tried sun flower seed butter & almond butter and loved them. Also, realize that most stuff you eat is gluten-free unless it involves bread. My son who doesn't have to eat gluten-free likes the rice tortillas better then the wheat cause they are sturdier. I eat more fruits and veggies which means my family does too.

Also, crying a few times is encouraged. Being extremely happy and doing a happy dance at WF when you find a gluten-free product you like is also acceptable. :)

precious831 Contributor

I've only been gluten-free for 2 1/2 days, so I'm very much a newbie. I'm awaiting my blood test results for celiac, but my doctor confirmed that I have dermatitis herpetiformus.

I had no idea that food meant this much to me before. I'm very sad about not being able to eat whatever I want. I was a bit relieved when I went to Walmart today and found that they have many gluten-free things at a more affordable price than the health food stores or another grocery store.

Please tell me this is a normal part of the process. I know that a lot of my health problems will be taken care of by avoiding gluten, and that will surely be a small price to pay.

Hugs to you and I know the feeling. However after in the beginning I was sort of in denial. I was optimistic, only did recently, last month it all dawned on me. I don't know why, I've been gluten free since last yr but I guess all my emotions just got bottled up. So last month I just exploded and cried for hours. Maybe months and months of people making negative comments to me added to that. I'm better now, I have to avoid dairy, yeast and shellfish.

Anyway, hang in there, it will get better. I think it's good you are going thru this now and not go like the way I did.

Precious

ravenwoodglass Mentor

You may be going through withdrawl. Many of us do. It is also a big change and not unusual to go through a mourning process. The celiac lifestyle is a big chance and involves so much. You do have celiac no matter what the blood tests results are and it is not unusual for folks with DH to have negative blood tests so don't let your doctor talk you out of the diet if the results are negative. I hope you heal quickly and do feel free to post any questions you may have. Also do check your personal care products for gluten ingredients, shampoos, lotions etc and just in case your doctor didn't mention it avoid iodine for a while also as iodine will keep the antibodies active in the skin.

K8ling Enthusiast

I was a HUGE bread eater. I loved fresh crusty sourdough, my dads homemade noodles. my moms chicken pot pie, my favorite white chocolate birthday cake...All fo that just disappeared. Even cheeseburgers (because really, what's a cheeseburger without a great fresh bun?!). I miss beer and pie and brownies and cake oh wow do I miss cake. Spinach dip in a sourdough bowl...

But I missed being healthy more. I missed spending time with my husband and son, going to baseball games, going on play dates. I missed seeing my friends and not constantly being terrified of embarrassing myself. I missed living without painkillers and anti diarrheal medicine and noting where EVERY. SINGLE. BATHROOM. was located.

I missed my life. If giving up all the food I love means I get my life back? if it means my husband and I can have...quality...time because I am not sick, if it means my hair isn't falling out anymore? I will do it. I will give up anything to be happier and healthier and not have people worry over me all the time. SO yeah it is hard at first but don't look at everything you CAN'T do, look at everything you're gaining- a body that is HEALTHY! A fulfilling life!!

To me, thats a BIG win!

((hugs)) welcome to the club!

Glamour Explorer

I was the biggest baby and went into a depression over bread, pizza, gravy and my normal way of cooking. At first it seemed impossible.

Eating out is the worst and I still get glutened.

I am fine with it now, if that is what it will take to get rid of my rash.

Udi's products, Homemade pizza with glutino or similar frozen crust.

The expense kills me.

Get up to date on all skin, shampoos, cosmetic, dental preparations.

ksymonds84 Enthusiast

You may be going through withdrawl. Many of us do. It is also a big change and not unusual to go through a mourning process. The celiac lifestyle is a big chance and involves so much. You do have celiac no matter what the blood tests results are and it is not unusual for folks with DH to have negative blood tests so don't let your doctor talk you out of the diet if the results are negative. I hope you heal quickly and do feel free to post any questions you may have. Also do check your personal care products for gluten ingredients, shampoos, lotions etc and just in case your doctor didn't mention it avoid iodine for a while also as iodine will keep the antibodies active in the skin.

I want to second this, my BIL has HD but did have a negative celiac panel. HD = permanent lifetime gluten free diet. Once he went gluten free, his rash slowly went away (a few weeks) and hasn't had it since (he's four years gluten free). I still miss things and will sometimes have a pity party,as my husband calls them. However; I tell my self that no matter how good it would taste it wouldn't be worth spending the next morning and perhaps afternoon in the bathroom!


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sandsurfgirl Collaborator

I have so many old threads about this. Losing gluten was like a death to me and I mourned the loss of favorite foods. I mourned the loss of freedom and not being able to just eat out wherever and whenever I wanted. I went through all the stages of grieving and sobbed like a baby over Guinness even though I've never been a big beer drinker (made me feel sick, go figure LOL).

Honor the process you are going through. Allow yourself to grieve. I'm Italian and the other day the crusty bread got to me. I was so sad that gluten free bread isn't like that.

But it gets SO much better and easier. I LOVE feeling good way more than I love that bread. And I have found so many great gluten free foods. The best part is I don't even want all that gluten free junk food very often. Gluten made me crave that type of stuff and now I'm off I eat clean and love it.

I had so many symptoms that were not gut related in addition to my horrible gut problems and I didn't even realize they were due to gluten. Just the other day I realized I don't cough in the morning anymore. I had chronic sinus infections and sinus problems, lung problems and a chronic cough. Every morning I would hack, cough and spit for an hour (so disgusting) before I could get going with my day. It occurred to me I haven't coughed in the morning or any time for that matter, for months now.

Go ahead and mourn. Cry and scream into a pillow. Journal and come here to complain. Get it all out because soon you'll be feeling better and the mourning will go away. This will become your life and you'll find all sorts of great foods to eat and you'll love feeling good.

Remember there is a withdrawal process. It can take time. It took me 5 months to really feel good and many go through a period where they feel sicker for a week or two. So hang in there with the diet!

sandsurfgirl Collaborator

The bread I love is Gluten Free Pantry basic white bread mix and their french bread and pizza mix. You do have to make them yourself but they are easy and the pizza crust is awesome. A quarter of the price of Udi's.

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      Two months ago, I started taking Dupixent for dermatitis herpetiformis and it has completely cleared it up. I can't believe it! I have had a terrible painful, intensely itchy rash for over a year despite going fully gluten-free. See if your doctor will prescribe Dupixent. It can be expensive but I am getting it free. When the dermatitis herpetiformis was bad I could not do anything. I just lay in bed covered in ice packs to ease the pain/itching and using way too Clobetasol. Dapsone is also very good for dermatitis herpetiformis (and it is generic). It helped me and the results were immediate but it gave me severe anemia so the Dupixent is better for me. Not sure if it works for everyone. I cannot help with the cause of your stress but from experience I am sure the severe stress is making the celiac and dermatitis herpetiformis worse. Very difficult for you with having children to care for and you being so sick. Would this man be willing to see a family therapist with you? He may be angry at you or imagine that your illness is a psychosomatic excuse not to take care of him. A therapist might help even if he won't go with you. Also do you have any family that you could move in with (with the kids) for a short time to get away? A break may be good for you both.
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