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

Newbie And The Big "d"

lucky97

By lucky97
in Coping with Celiac Disease

Recommended Posts

lucky97 Explorer
lucky97
Posted

Hello all,

This one will take some explaining, it's a bit unpleasant but so has this whole ordeal, so let's get to it...feel free to chime in.

Apparently one way to tell if you've been "glutened" is the big "D." I've read this countless times already on this forum in the past couple months since my own diagnosis in November 2010 at age 45...largely an asymptomatic case (except when the jaundice from the undiagnosed condition set in which set off all types of alarms).

Correct me if I'm wrong but MOST of this new diet does not inspire, forgive me, real tight, compact "movements." Brown rice, potatoes, Larabars...I gets lots of loose stuff from these foods. I've been careful to first eliminate obvious sources of gluten, then the secondary, and now the hidden stuff, and still get "D" or so it seems from this diet.

What do you folks say??? I'm truly perplexed by this experience I have on a regular occasion, and attribute it not being "glutened" but the nature of the whole foods. Distinctions, please?

Thanks in advance for sharing on this touchy subject, please believe me I would not have posted if I could figure it out myself by what I've read.

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

Celiac.com Sponsor (A8-M):


YoloGx Rookie
YoloGx
Posted

Hello all,

This one will take some explaining, it's a bit unpleasant but so has this whole ordeal, so let's get to it...feel free to chime in.

Apparently one way to tell if you've been "glutened" is the big "D." I've read this countless times already on this forum in the past couple months since my own diagnosis in November 2010 at age 45...largely an asymptomatic case (except when the jaundice from the undiagnosed condition set in which set off all types of alarms).

Correct me if I'm wrong but MOST of this new diet does not inspire, forgive me, real tight, compact "movements." Brown rice, potatoes, Larabars...I gets lots of loose stuff from these foods. I've been careful to first eliminate obvious sources of gluten, then the secondary, and now the hidden stuff, and still get "D" or so it seems from this diet.

What do you folks say??? I'm truly perplexed by this experience I have on a regular occasion, and attribute it not being "glutened" but the nature of the whole foods. Distinctions, please?

Thanks in advance for sharing on this touchy subject, please believe me I would not have posted if I could figure it out myself by what I've read.

You haven't said, but I suspect you might still be getting what is knows as "cross contamination" (CC) from gluten.

Its also important to no longer buy things from bulk bins given that they are often CC'd by gluten from the dusting/cleaning of other surrounding bins.

In addition, its important to avoid trace gluten in soaps, shampoo, makeup, alcohol, tinctures, vitamins and supplements, homeopathics, toothpaste, lotions or even from kissing someone who drank or ate something that has gluten in it. I have even gotten glutened from someone opening up a water bottle for me or shaking my hand after they ate some bread. Eventually if I haven't washed my hands afterwards, the gluten somehow migrates to my lips... Ditto problems for some of us from gluten dust in the air, say in a bakery or a friend's kitchen, or in my experience from fresh cut sheetrock or working with various building compounds like Fix-all or some powdered floor leveler or dust from sanded wall patch.

Its also possible to be allergic or sensitive to other food items that could cause D too--esp. due to leaky gut issues caused by damaged villi in the intestines. Somehow going off the gluten then makes your body more able to discriminate and not like other offending foods whose effects you might not have been aware of in the past.

For me for instance I now know I have to stay away from salicylic acid which is a common ingredient in many fruits, vegetables, seeds, nuts and herbs.

I'd make sure there was no CC going on first however.

Bea

GFinDC Veteran
GFinDC
Posted

I don't know what your diet is like now. But a whole foods diet is a real good way to start on the gluten-free road. whole foods like meats, whole vegetables, whole fruits etc. Also take a good look at any vitamin pills or meds you take, and consider eliminating them for a while to see if it helps.

How about things you are drinking, like juices, sodas, teas, coffees, alcohol? Any of those can cause reactions if they have gluten or some other ingredient that you are sensitive to.

A simple diet with few foods is easier to understand and troubleshoot than a varied diet with lots of food ingredients.

Remember also that oats bother some of just like gluten does.

Fire Fairy Enthusiast
Fire Fairy
Posted

I'm 36 and went gluten free November last year. I too am still having issues. I gave up Milk in December. I had been assuming it was because my villi weren't healed yet but after reading the other responses I'm starting to wonder. The thing is I usually get migraines from gluten so I think I can rule out CC as a cause for me.

Jill0711 Rookie
Jill0711
Posted

In some ways, you can have issues from the diet alone and it is usually from lack of fiber. A lot of the gluten-filled products are enriched while the gluten-free versions are not. The other consideration is dairy. I was still having D after going gluten-free and I tracked it down to a dairy intolerance. Having a milk intolerance is actually very common for the newly diagnosed because the damage in the small intestine also hinders the body's ability to break down milk. I would try to eliminate dairy for a week and see if it improves. Some people are able to add milk back into the diet after some healing takes place; others cannot. If it is not dairy, you may need to look for some alternate source of fiber. You could also look for other food intolerances like corn, soy, etc. The best thing to do as someone mentioned was to start with a whole foods diet and then add things in slowly to see what you can tolerate. Keeping a food journal is a pain, but it really helps to notice a pattern.

Marilyn R Community Regular
Marilyn R
Posted

I'm so sorry you aren't feeling better yet.

It could be that your autoimmune system is attacking other similar proteins like soy, dairy, corn... something you may find worthwhile searching on the forum.

I was good with everything gluten-free at first, then had to eliminate soy, dairy and corn to alleviate that darn tooting "D". I had to start rotating foods too, but you may not have to do that.

If you have insurance and can go to an allergist, I highly recommend skin prick testing. I ended up being highly allergic to pecans, an ingredient I was regularly consuming in a gluten-free Soy Free bar.

Pecan Pie used to be one of my holiday regulars for potlocks, etc. I swear I would have never in a million years guessed that I was allergic to pecans! Or clams! (That came out in skin prick testing too.)

Hope you figure it all out and feel better soon! :) Good luck!

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,190
    • Most Online (within 30 mins)
      7,748
    Jlp523
    Newest Member
    Jlp523
    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
      Food Allergies

      By Ginger38 · Posted

      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
      Bread choice for a newbie

      By Kris2093u4 · Posted

      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
      7yo struggling!

      By JForman · Posted

      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
      My mo,ther married a bread making when I was 4

      By Jane878 · Posted

      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
      Blood results

      By trents · Posted

      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...