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

A Cry For Help


runner5

Recommended Posts

runner5 Newbie

Hi I am new to this forum. I was diagnosed in October of 2003 through very elevated blood tests and some symptoms. I have been trying to follow the diet for the past two years and I will admit every once in a while I cheat. I know there are others out there who are surviving but I find eveything sssoo tempting (even if I didn't like it before the diagnosis!) Any tips?

Now even when I am doing good and eating gluten-free for a while I get terrible abdominal pains and cramps. Lots of times it is when I know I haven't eaten anything wrong. Things seem to have gotten worse since I have started the diet. Whats up? Any ideas?

Thanks for reading!


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



Celiac.com Sponsor (A8-M):



judy05 Apprentice
Hi I am new to this forum. I was diagnosed in October of 2003 through very elevated blood tests and some symptoms. I have been trying to follow the diet for the past two years and I will admit every once in a while I cheat. I know there are others out there who are surviving but I find eveything sssoo tempting (even if I didn't like it before the diagnosis!) Any tips?

Now even when I am doing good and eating gluten-free for a while I get terrible abdominal pains and cramps.  Lots of times it is when I know I haven't eaten anything wrong. Things seem to have gotten worse since I have started the diet. Whats up? Any ideas?

Thanks for reading!

<{POST_SNAPBACK}>

I stated to go gluten-free around the same time that you were diagnosed. I don't cheat but I do sometimes overeat on some of the gluten-free foods. Gluten causes terrible migraines which scare me so bad it keeps me from cheating. When I first went gluten-free I got worse before I got better. I spent a whole summer curled up in a fetal position because of the pain and cramping. My GI doc said that I have a lot of air in my belly which was causing the right-sided pain. I found fiber pills helped. They are for diarrhea and constipation both. It took almost 9mos to feel better and I think the final tip that helped me was to give up all dairy. I still can only eat hard cheddar. Try to keep foods handy so you won't be tempted to cheat. There are plenty of good foods that don't contain Gluten! Please try to remember that gluten is like eating poison, you don't know what it will lead to in the future. Hope this helps.

Claire Collaborator

Amen to everything in Judy's message - especially the part about what this gluten can do to you over time.

My personal experience is testimony to the fact that even if it isn't giving you terrible migraines, or record breaking big D - it may be silently messing up some cells in your body and one day the effects of that cell damage will show up. Mine did.

We are all tempted and it can be tough. I can pass up cakes and pies, even bread but just don't show me a delicious looking scone. So I go into a new little cafe next to our local Meat Market and there they are - fresh from the oven. It would have been much easier to say "gluten be dammed" than to sit, as I did, with a cup of coffee (great coffee) and read the morning paper.

Simply put, I don't want my condition to worsen. If not eating gluten containing foods is the price for that - so be it. The pleasure is for the moment. The disability is for keeps. Claire

Billygoat Apprentice

It IS hard to not cheat sometimes. But like someone else said, keep some gluten-free sweets and yummies around. When that craving hits me, at least I have SOMETHING to turn to as an alternative. Now when I see things I shouldn't eat, I have a much easier time turning it down.

When I react now, it's because I've ingested something that has gluten in it and I didn't realize it. Up until this summer, I just assumed "wheat free" meant "gluten-free". SOOOO not the case! I was eating stuff left and right with gluten in it and couldn't figure out why I was reacting.

Just last night, hubby and I go out for sushi and I forgot to take my San-J soy sauce. Thank goodness there was a Whole Foods about 5 minutes away, so I could make a run for it. I remember sitting there thinking, "I can just go ahead and eat my sushi with the regular soy sauce and pay for it for the next several weeks. Or I can take out 15 minutes and go to the store and be a good girl." I opted to be a good girl and I'm very grateful this morning. ;)

Jnkmnky Collaborator
Hi I am new to this forum. I was diagnosed in October of 2003 through very elevated blood tests and some symptoms. I have been trying to follow the diet for the past two years and I will admit every once in a while I cheat. I know there are others out there who are surviving but I find eveything sssoo tempting (even if I didn't like it before the diagnosis!) Any tips?

Now even when I am doing good and eating gluten-free for a while I get terrible abdominal pains and cramps.  Lots of times it is when I know I haven't eaten anything wrong. Things seem to have gotten worse since I have started the diet. Whats up? Any ideas?Thanks for reading!

<{POST_SNAPBACK}>

You can't cheat. If you do, you won't feel better. Maybe your body doesn't like to be antagonized. Stop cheating.

kolney Newbie

Why cheat? I was diagnosed one month before you and have never been tempted to cheat. I am so healthy being gluten-free I NEVER want to go back. Learn to cook and bake if you don't know how. You can make everything that tempts you gluten-free, well maybe not beer, but baked goods, pizza, cakes, sweet rolls, etc. If you need recipes, go to www.delphiforums.com then celiac disease. there is an entire folder of recipes. Also get gluten-free cookbooks from ebay or amazon .com. Your health is worth investing your time, money, and energy. You WILL be better off. Good luck. :)

Kathryn

Zeeland, MI

LLCoolJD Newbie

It seems the focus of the poster's message wasn't about cheating but about unexplained gastro problems...

There's always the chance that you're eating something with gluten that you don't know about. This is the case most of the time. Try to keep track of what you eat, so you can isolate possible culprits in your diet. For me, Hornsby's Cider, which I've read contains gluten, was a hidden problem for a while.

There's also the chance that you've got other food intolerances/allergies. I know another person with Celiac disease who cannot tolerate much soy. And personally, I suspect that dairy gives me some problems (cheddar is probably the least problematic due to its relatively low lactose content). Tomato paste, though gluten free, also causes some problems for me, so I stick to fresh tomatoes these days.


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



Celiac.com Sponsor (A8-M):



Guest BellyTimber

I don't feel much better after nearly 3 years, it evidently does take quite a while for some of us.

Console yourself by thinking that the better and longer you keep up your new diet, the better foundation you are laying for the remainder of your life.

Keep up the green veg (for the calcium).

Maybe like me while you don't eat things made from wheat, gluten etc there are traces from the manufacturing process, and that is something we may get better at avoiding as time passes.

Look at what you have achieved so far, compliment yourself for your adventurousness, and let us know how you get on.

Immerse yourself in the goldfield of recipes, shopping ideas etc on this site, I don't put the recipes into action much but I find them food for wholesome thinking.

I've learned that there are substitute flours for every ordinary flour in just about every kind of food, so that will help me when I get back to cooking & baking.

I turned half my living room into a pantry so I have better food preparation space.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,176
    • Most Online (within 30 mins)
      7,748

    Ceekay
    Newest Member
    Ceekay
    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

    • 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.
    • Sheila mellors
      I asked about the new fruit and nut one and the Dietician said yes I could eat it safely. Hooe this helps
    • Heatherisle
      Daughter has started gluten free diet this week as per gastroenterologists suggestion. However says she feels more tired and like she’s been hit by a train. I suggested it could be the change to gluten free or just stress from the endoscopy last week catching up with her. Just wondering if feeling more tired is a normal reaction at this stage. I suppose it’s possible some gluten might have been present without realising. Have tried to reassure her it’s not going to resolve symptoms overnight
    • DAR girl
      Looking for help sourcing gluten-free products that do not contain potato or corn derived ingredients. I have other autoimmune conditions (Psoriatic Arthritis and Sjogrens) so I’m looking for prepared foods as I have fatigue and cannot devote a lot of time to baking my own treats. 
×
×
  • Create New...