Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Mourning The Loss Of Gluten?


firefightersgal

Recommended Posts

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.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



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!


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



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.

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,195
    • Most Online (within 30 mins)
      7,748

    Florentina
    Newest Member
    Florentina
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Ginger38
      So I recently had allergy testing for IGE antibodies in response to foods. My test results came back positive to corn, white potatoes, egg whites. Tomatoes, almonds and peanuts to name a few.  I have had obvious reactions to a few of these - particularly tomatoes and corn- both GI issues. I don’t really understand all this allergy versus celiac stuff. If the food allergies are mild do I have to avoid these foods entirely? I don’t know what I will eat if I can’t  have corn based gluten free products 
    • Kris2093u4
      Geography makes a difference.  I'm in the West and Trader Joe's gluten-free bread tastes great and is a better price than most gluten-free breads sold elsewhere in my area.  
    • JForman
      We have four children (7-14 yo), and our 7 year old was diagnosed with NCGS (though all Celiac labs were positive, her scope at 4 years old was negative so docs in the US won't call it celiac). We have started her on a Gluten Free diet after 3 years of major digestive issues and ruling out just about everything under the sun. Our home and kitchen and myself are all gluten-free. But I have not asked my husband/her dad or her other siblings to go completely gluten-free with us. They are at home, but not out of the home. This has led to situations when we are eating out where she has to consistently see others eating things she can't have and she has begun to say "Well, I can't have <fill in the blank>...stupid gluten."  How have you supported your gluten-free kiddos in the mental health space of this journey, especially young ones like her. I know it's hard for me as an adult sometimes to miss out, so I can't imagine being 7 and dealing with it! Any tips or ideas to help with this? 
    • Jane878
      By the time I was 5 I had my first auto0immune disorder, Migraine headaches, with auras to blind me, and vomiting, sensitivity to light and sound. I was 5 years old, and my stepfather would have pizza night, milling his own flour, making thick cheesy gluten pizza, that I would eat and the next day, I would have serious migraines, and my mother & stepfather did nothing about my medical problems. When I was 17 in my first year at college, I was diagnosed with my 2nd known auto-immune disorder, Meniere's disease. I was a elite athlete, a swimmer, and soccer player. And once again my parents didn't think anything of understanding why I had a disorder only older people get. Now after my mother passed from Alzheimer's disease she also suffered with living with gluten. She had a rash for 30 years that nobody could diagnose. She was itchy for 45 years total. My brother had a encapsulated virus explodes in his spleen and when this happened his entire intestines were covered with adhesions, scar tissue and he almost lost his life. He has 5 daughters, and when I finally was diagnosed after being pregnant and my body went into a cytokine storm, I lost my chance to have children, I ended up having Hashimoto's disease, Degenerative Disc disease, and my body started to shut down during my first trimester. I am 6ft tall and got down to 119lbs. My husband and I went to a special immunologist in Terrace, California. They took 17 vials of blood as we flew there for a day and returned home that evening. In 3 weeks, we had the answer, I have Celiac disease. Once this was known, only my father and husband made efforts to change their way of feeding me. At the family cabin, my stepfather & mother were more worried that I would ruin Thanksgiving Dinner. It wasn't until one of my cousins was diagnosed with Celiac disease. They finally looked into getting Gluten Free flour and taking measures to limit "gluten" in meals. He did nothing but ask for me to pay for my own food and wi-fi when I came to the cabin to stay after our house burned down. When he informed my mother, they proceeding to get into a physical fight and she ended up with a black eye. The is just more trauma for me. Sam had no interest in telling the truth about what he wanted. He lied to my mother that he had asked my husband if I could pay for "food" when he asked Geoffrey if I had money to pay for my wi-fi. My mother hates when he spends so much time on the computer so he lied and said I could pay for my own food. I will remind you I weighed 119lbs at this time. (At 6ft) that is a very sick looking person. Neither parent was worried about my weight, they just fought about how cheap my stepfather was. As my mother was diagnosed with Alzheimer's disease in 2014. He had her sign over the will to a trust and added his children. He had no testimonial capacity at the time, so she signed without proper papers. Making this Trust null and void. When I gave my brother my childhood home, my mother stated I would be getting an equal part of inheritance to the house on Race. It currently worth 2.0 million $. I got nothing, and my stepfather has since disowned me b/c of my claim and he knows that my mother would never have left it uneven between my biological brother and myself. She sat me and my husband down, as we lived at the Race Street house and treated and took care of it as our own. My brother took over b/c he was going through a horrific divorce and needed a home so he could get a better custody deal with his soon to be ex-wife who was a Assist DA for Denver. She used the girls against him, and he & I were the primary caregivers. We, Judd and I spent the most time with them pre the divorce. Once Judd moved into the house, he threw all of my mother, grandmother and my family heirlooms out to the Goodwill. Nobody told my mother about this as she was going through cancer treatment and had Alzheimer's disease in her mother and her sister. My stepfather and biological brother took advantage of this matter, as I called a "family council" that my brother just never could make it to at the last moment. All of the furnishing, kitchen ware, everything was in the house my brother just moved into. He had had 2 weddings, I chose to elope b/c my stepfather ruined my brother's first wedding by talking about his relationship with my brother in front of my dad and his entire family, insulting him and having my grandfather leave the ceremony. It was a disaster. My stepfather just plays dumb and blames my father for the slight. I was the only child not to have a wedding. So, my mother and stepfather never had to pay for a thing. My mother had had an agreement with my father he'd pay for college and all medical issues with their kids, myself and Judd. So truly my mother never had to pay for anything big for me in her entire life. I am looking for anyone that has had a similar story, where they grew up in a household that had a baker that regularly milled flour and ate gluten. What happened to you? DId you suffer from different auto-immune diseases b/c of living with a baker using "gluten" Please let me know. I have been looking into legal ways to get my stepfather to give me what my mother had promised, and he erased. Thank you for listening to my story. Jane Donnelly  
    • trents
      Possibly gluten withdrawal. Lot's of info on the internet about it. Somewhat controversial but apparently gluten plugs into the same neuro sensors as opiates do and some people get a similar type withdrawal as they do when quitting opiates. Another issue is that gluten-free facsimile flours are not fortified with vitamins and minerals as is wheat flour (in the U.S. at least) so when the switch is made to gluten-free facsimile foods, especially if a lot of processed gluten-free foods are being used as substitutes, vitamin and mineral deficiencies can result. There is also the possibility that she has picked up a virus or some but that is totally unrelated to going gluten-free.
×
×
  • Create New...