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

Gluten Free And Still Have Werid Symptoms


chili

Recommended Posts

chili Apprentice

Hello, can anyone tell me if they still felt symptoms after going gluten free? I startd getting my old symptoms back again...There were a few times that I did get contaminated, but for the most part I am very careful. I get numbness in my hands and feet, very sensitive to hot and cold. painful joints. My doc is checking me for a number of things. R. Arthritis. Lupus, any sort of inflamation. I also suffer for panic and anxiety. I get heavy feelings on my chest, fogginess, I feel like I can't focus. headaches. I had all those heart tests done and everything was fine. Is it possible to be allergic to gluten free bread. I heard that even though they are gluten free, they still have some form of a gluten protein....

I am frustrated and just want get better!!!!


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



Celiac.com Sponsor (A8-M):



dilettantesteph Collaborator

I did react to gluten free bread as well as a lot of other gluten free stuff. Naturally gluten free things washed well work better.

eatmeat4good Enthusiast

It can take time to heal and if you get accidentally glutened you can get all those symptoms back unfortunately. It could also be soy. It does terrible things. I'm glad your Dr. is following up on other options. Try to be very strict with your diet and know that it can just take time. It isn't easy to be patient especially when you don't feel well. I hope you feel better soon.

chili Apprentice

Thank you for getting back to me... Is soy lethicin and soy the same??? how do u know what else could cause reactions. This is just so frustrating...I hate the foggy head fuzzy eye feeling..I have children and I feel like I need to be 100% and I just dont feel that way. I don't know what else to do!!! who would of thought that something we have to ingest to keep us alive can be so toxic!

Jestgar Rising Star

some people who are sensitive to soy can eat a bit of soy lecithin, others can't. You have to figure out what your body will tolerate.

kwylee Apprentice

I didn't start feeling "clear" in the head and strong in the knees, until I removed casein and soy in addition to gluten.

eatmeat4good Enthusiast

Unfortunately me too- had to remove dairy AND soy. Didn't do it right away since getting rid of gluten was hard enough but I sure wish I had. Would have healed sooner. But in the end figured it out. I hope you do too. I personally allow a little soy lecithin like in chocolate once a week, and I don't seem to notice ill effects, but I am going to get the Enjoy Life chocolate Chips when I can to eliminate that too.


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



Celiac.com Sponsor (A8-M):



IrishHeart Veteran

Ditto on eliminating the dairy and soy.

I had (and still do --to some extent) all those symptoms you describe, too--and if I accidentally get glutened or soyed now--I feel those same feelings. Spacey, scary I know...it DOES clear up, though.

If you are newly gluten-free, dairy should be eliminated at first because..."Lactase, which is the enzyme that breaks down the sugar lactose, is produced in the tip of the villi.

When the villi get blunted in celiac disease, sometimes the ability to digest lactose is decreased and you can become lactose intolerant. This may cause bloating, stomach cramps, diarrhea, etc. After you go gluten-free, the villi will heal and most people are able to tolerate dairy foods again." (Danna Korn's Book)

Soy protein, soy lecithin, soybean oil can all cause problems, but some people do okay with the lecithin.

It's best to avoid it if you are newly gluten-free. It's hard to digest.

Just some thoughts! ;)

hang in there.

chili Apprentice

How do I know if I can't have those things. I love cream in my coffee, could that be hurting me? W#hat about cheese...I love cheese and eat it everyday? do I need to give that up as well..I have no idea what casein is where it's found. I feel so overwhelmed, and frustrated because I keep ending up at the doctors office, and things get ruled out as anxiety!!

kwylee Apprentice

I know it seems overwhelming, but it gets easier - and yep! casein and soy elimination may really be temporary.

When I did this, I hit the internet where casein facts abound, and I read those labels. Of course milk, and yes, cheese (sorry) are big casein offenders, but so are things like ice cream, sour cream and butter (the latter makes my head spin like the girl from the exorcist movie- at least, the last time I tested my reaction). When it comes to cheese, my research has shown that the gooier or creamier it is, the more casein it has, certainly open to correction on that. But it's a moot point, because at first, you'll want to remove ALL of it. And soy. That's usually easier to spot, since "soy" is listed as an ingredient in some variation.

If you give it a few weeks minimum and you feel better, you'll know you're on to something. I'm actually feeling so good in the last 6 months, it's not the end of life if I never can go back to eating any of it. But I have a feeling I will be able to in time.

ndw3363 Contributor

I'm beginning to think that I have to give up dairy and soy too, but then what will I eat?? What would you use instead of butter? How can I ever eat sushi again without soy? I've been able to get past the whole "never gonna have a slice of real pizza again" thing, but now I have to give up butter?? And sour cream?? And I'm actually a healthy eater!! I think cutting gluten out of my diet has made me notice the dairy problem more. Never really noticed it before, but I had some super awesome dark chocolate gelato (gluten-free) on Friday night and I felt it instantly. Been having sinus problems ever since (and my sinuses had gotten SO much better). Oh well - I can only hold onto the hope that after I heal, I can bring ice cream back into my life.

kwylee Apprentice

I'm beginning to think that I have to give up dairy and soy too, but then what will I eat?? What would you use instead of butter? How can I ever eat sushi again without soy? I've been able to get past the whole "never gonna have a slice of real pizza again" thing, but now I have to give up butter?? And sour cream?? And I'm actually a healthy eater!! I think cutting gluten out of my diet has made me notice the dairy problem more. Never really noticed it before, but I had some super awesome dark chocolate gelato (gluten-free) on Friday night and I felt it instantly. Been having sinus problems ever since (and my sinuses had gotten SO much better). Oh well - I can only hold onto the hope that after I heal, I can bring ice cream back into my life.

For the butter replacement you might try Purity Farms ghee. It's butter w/o the milk solids and that brand is certified casein free. Ghee is actually healthy for you. For that sushi, you might experiment with alternative fresh sauces. When I want something for dipping, I combine apple cider vinegar (or saki), a bit of ketchup, a touch of molasses, some honey and olive oil, salt and pepper to taste. Goes great with my homemade chicken, avocado and carrot rolls I make with rice paper. For desserts, these days I combine a bit of nut butter with banana and honey, put in the food processer until it's creamy, freeze and it makes a great dairy free ice cream. I've also seen it done with honey and avocado but haven't tried it yet. Sounds strange but supposedly really wonderful creamy texture. There are superb gluten-free/CF/SF chocolate chips made by Enjoy Life that I eat right out the bag for a chocolate fix, or sprinkle them ontop of gluten-free/CF/SF black bean brownies, which recipe I got off the internet. AMAZING!!!!

The same thing happened to me with dairy. I had symptoms before that were lumped together with all the others and not discernable, but once I went gluten free, it was very apparent that I was also reacting to casein and soy. I think you're on the right tract to hope that your body will one day tolerate dairy & soy again. In the meantime, just get creative and find alternatives, and by the time you're happy with those, it'll be time to see if you can add the other items back into your diet. I'm never going back from the black bean brownies, though. So good!

Cloelke Newbie

I'm beginning to think that I have to give up dairy and soy too, but then what will I eat?? What would you use instead of butter? How can I ever eat sushi again without soy? I've been able to get past the whole "never gonna have a slice of real pizza again" thing, but now I have to give up butter?? And sour cream?? And I'm actually a healthy eater!! I think cutting gluten out of my diet has made me notice the dairy problem more. Never really noticed it before, but I had some super awesome dark chocolate gelato (gluten-free) on Friday night and I felt it instantly. Been having sinus problems ever since (and my sinuses had gotten SO much better). Oh well - I can only hold onto the hope that after I heal, I can bring ice cream back into my life.

I have only been gluten free for like 2wks but dairy free for 4 1/2 months because I'm breastfeeding and my little guy doesn't tolerate much dairy. There is Best Life Buttery spread at Walmart that is gluten free too. Almond Milk is yummy. As for ice cream natural food stores have Purely Decadent Frozen dessert which is dairy and gluten free. It's not ice cream but it's as close as you can get dairy free. You can also get dairy free cheese, sour cream, cream cheese. I tried the dairy free shredded cheese and didn't really like it but I'm fussy. The tofu stuff unless you like tofu is yucky. Oh! check your chocolate. Go semi sweet gluten free say goodbye to milk chocolate. Sorry. I was not happy about that one. I'm slowly bring dairy back hoping to be there by the time summer is in full swing. Must have ice cream in the summer. hope all goes well for you.

sandsurfgirl Collaborator

I'm beginning to think that I have to give up dairy and soy too, but then what will I eat?? What would you use instead of butter? How can I ever eat sushi again without soy? I've been able to get past the whole "never gonna have a slice of real pizza again" thing, but now I have to give up butter?? And sour cream?? And I'm actually a healthy eater!! I think cutting gluten out of my diet has made me notice the dairy problem more. Never really noticed it before, but I had some super awesome dark chocolate gelato (gluten-free) on Friday night and I felt it instantly. Been having sinus problems ever since (and my sinuses had gotten SO much better). Oh well - I can only hold onto the hope that after I heal, I can bring ice cream back into my life.

It may not be forever. In the beginning I had to cut dairy, soy, nightshades, tapioca (a tough one with gluten free subs) and xanthan gum!!! But eventually ALL of them came back, even soy. Soy was by far my worst other intolerance reaction and now it's so fine I made food with wheat free soy sauce twice this week.

It takes time to heal gut damage and all the other damage. Your little body repairing construction crew needs all the tools necessary- clean healthy foods, lots of water and lots of rest. it's only for a few months that you have to live like this. If you bite the bullet and be really clean and simple with your diet now it will pay off in the long run.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,188
    • Most Online (within 30 mins)
      7,748

    Leeila
    Newest Member
    Leeila
    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...