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

Suspected Celiacs, Plus Soy Problem?


mrsbam

Recommended Posts

mrsbam Newbie

Is it possible that I only react to Soy after starting gluten free, even only after a few days?

I have had problems getting a diagnosis for years, and I have tried gluten-free a few times with good results, but I always had a problem with the brain fog comming back and odd dizzyness after some food.

I had suspected Soy was the issue, but a Soy free diet always failed (never did gluten-free & Soy free). Then a few months ago, after what I remember was a gluten-free weekend (not on purpose) I had a severe dizzy, then opiate like reaction to dark chocolate (cocoa 70% + soy lechtin).

This time after going gluten-free for a few days, a dose of Soy from a pastry (tuesday night) gave me exactly the same dizzy reaction, and I still have a severe "brain fog" today (wednesday) that had lifted since starting the gluten-free diet on sunday.

When eating foods with gluten in them, I do not generally get this reaction, and no where as severe.

(everyday symptoms: fatigue, blood noses, brain fog, moods, bruising, weight issues, wanting for high energy foods, IBS (incl mucas), and others)


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



Celiac.com Sponsor (A8-M):



mushroom Proficient

Hi mrsbam, and welcome to the forum. The short answer to your question is, yes.

The longer answer is that many of us discover other intolerances after we eliminate gluten from our diet. It seems that the body is so overwhelmed by trying to deal with the gluten that it really doesn't have much time to tell us about the other problems going on until the gluten is gone. And then it says, oh, by the way, I also have a problem with soy, and I am going to tell you this by (choose one) itching, dizziness and brain fog, GI symptoms, etc. So you eliminate this and then body says, oh, and while you're about it, you might want to stop eating (choose one or more) dairy, corn, nightshades, caffeine, nuts, bananas, it seems the list here is endless of additional intolerances we might uncover. Fortunately most of us are not bombarded with them all. Many of these are difficult to track down, but you seem to be tracking with soy pretty well. I, too, cannot handle the soy lecithin in chocolate, which is very limiting if you are a chocoholic like me. But Fair Trade makes a soy-free/gluten free chocolate and Enjoy Life makes gluten/soy free chocolate chips, so all is not lost. And there are others besides.

Is it possible for to get the blood test for celiac done now? Because you really should do it while you are still eating gluten for the results to be valid.

ksymonds84 Enthusiast

Soy was the missing link for me as well. During my first year gluten free, I still had problems and suspected soy since soy milk gave me bad gas. I eliminated soy except for soybean oil and lecithin. I got tested for soy back in early August and did show an elevated IgA to soy. This time around, I have eliminated all soy including the oil and lecithin and diligently read labels to see where it is hiding and I feel the best ever! For me, gluten causes the brain fog, arthritis, tingly face, and gastro symptoms. Soy causes quick gastro symptoms plus acne around my mouth so its easy for me to figure which one got me. A food journal helps tremendously in the beginning. I also second mushroom's advice that if you are still eating gluten to get all the testing that you want done now. Hope you get it all figured out! :)

mrsbam Newbie

I will be trying to see my doc on friday arvo, and a previous blood test came back negative, but that's before I knew about the 6 week thing, and my doc never mentioned it. I had been gluten free for a few weeks before, minus a week where I had started again, and the weekend before I did it without thinking.

Thanks for all the advice and help, now to see where this rabbit hole ends :).

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,189
    • Most Online (within 30 mins)
      7,748

    Eric bell
    Newest Member
    Eric bell
    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...