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Mourning The Loss Of Gluten?

firefightersgal

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firefightersgal Apprentice
firefightersgal
Posted

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
kareng
Posted

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
precious831
Posted

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
ravenwoodglass
Posted

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
K8ling
Posted

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
Glamour
Posted

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
ksymonds84
Posted

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
sandsurfgirl
Posted

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
sandsurfgirl
Posted

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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  • Posts

    • captaincrab55
      Finding gluten free ingredients

      By captaincrab55 · Posted

      Imemsm, Most of us have experienced discontinued, not currently available or products that suddenly become seasonal.   My biggest fear about relocating from Maryland to Florida 5 years ago, was being able to find gluten-free foods that fit my restricted diet.  I soon found out that the Win Dixie and Publix supper markets actually has 99% of their gluten-free foods tagged, next to the price.  The gluten-free tags opened up a  lot of foods that aren't actually marked gluten-free by the manufacture.  Now I only need to check for my other dietary restrictions.  Where my son lives in New Hartford, New York there's a Hannaford Supermarket that also has a gluten-free tag next to the price tag.  Hopefully you can locate a Supermarket within a reasonable travel distance that you can learn what foods to check out at a Supermarket close to you.  I have dermatitis herpetiformis too and I'm very sensitive to gluten and the three stores I named were very gluten-free friendly.  Good Luck 
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long?   DGP IgG antibodies are produced in response to a partial gluten molecule.  This is different than what tissue transglutaminase antibodies are  produced in response to.   TTg IgA antibodies are produced in the intestines in response to gluten.  The tTg IgA antibodies attack our own cells because a structural component in our cell membranes resembles a part of gluten.  There's a correlation between the level of intestinal damage with the level of tTg antibodies produced.  You are not producing a high number of tTg IgA antibodies, so your level of tissue damage in your intestines is not very bad.  Be thankful.   There may be reasons why you are not producing a high quantity of tTg IgA antibodies.  Consuming ten grams or more of gluten a day for two weeks to two months before blood tests are done is required to get sufficient antibody production and damage to the intestines.  Some undiagnosed people tend to subconsciously avoid lots of gluten.  Cookies and cakes do not contain as much gluten as artisan breads and thick chewy pizza crust.  Anemia, diabetes and thiamine deficiency can affect IgA antibody production as well.   Do you carry genes for Celiac?  They frequently go along with EDS.
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      Food and environmental allergies involve IgE antibodies.  IgE antibodies provoke histamine release from mast cells.   Celiac disease is not always visible to the naked eye during endoscopy.  Much of the damage is microscopic and patchy or out of reach of the scope.  Did they take any biopsies of your small intestine for a pathologist to examine?  Were you given a Marsh score? Why do you say you "don't have intestinal damage to correlate with lifelong undiagnosed celiac disease"?   Just curious.  
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