Jump to content
  • 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.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - catnapt posted a topic in Related Issues & Disorders
      0

      anyone here diagnosed with a PARAthyroid disorder? (NOT the thyroid) the calcium controlling glands

    2. - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      how much gluten do I need to eat before blood tests?

    3. - Jmartes71 posted a topic in Coping with Celiac Disease
      0

      Curious question

    4. - Amy Barnett posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      0

      Question

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,322
    • Most Online (within 30 mins)
      7,748

    avery144
    Newest Member
    avery144
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • catnapt
      learned I had a high PTH level in 2022 suspected to be due to low vit D  got my vit D level up a bit but still have high PTH   I am 70 yrs old (today in fact) I am looking for someone who also has hyperparathyroidism that might be caused by malabsorption    
    • catnapt
      I am on day 13 of eating gluten  and have decided to have the celiac panel done tomorrow instead of Wed. (and instead of extending it a few more weeks) because I am SO incredibly sick. I have almost no appetite and am not able to consume the required daily intake of calcium to try to keep up with the loss of calcium from the high parathyroid hormone and/or the renal calcium leak.    I have spent the past 15 years working hard to improve my health. I lost 50lbs, got off handfuls of medications, lowered my cholesterol to enviable levels, and in spite of having end stage osteoarthritis in both knees, with a good diet and keeping active I have NO pain in those joints- til now.  Almost all of my joints hurt now I feel like someone has repeatedly punched me all over my torso- even my ribs hurt- I have nausea, gas, bloating, headache, mood swings, irritability, horrid flatulence (afraid to leave the house or be in any enclosed spaces with other people- the smell would knock them off their feet) I was so sure that I wanted a firm diagnosis but now- I'm asking myself is THIS worth it? esp over the past 2 yrs I have been feeling better and better the more I adjusted my diet to exclude highly refined grains and processed foods. I didn't purposely avoid gluten, but it just happened that not eating gluten has made me feel better.   I don't know what I would have to gain by getting a definitive diagnosis. I think possibly the only advantage to a DX would be that I could insist on gluten-free foods in settings where I am unable to have access to foods of my choice (hospital, rehab, nursing home)  and maybe having a medical reason to see a dietician?   please let me know if it's reasonable to just go back to the way I was eating.  Actually I do plan to buy certified gluten-free oats as that is the only grain I consume (and really like) so there will be some minor tweaks I hope and pray that I heal quickly from any possible damage that may have been done from 13 days of eating gluten.    
    • Jmartes71
      So I've been dealing with chasing the name celiac because of my body actively dealing with health issues related to celiac though not eating. Diagnosed in 1994 before foods eliminated from diet. After 25 years with former pcp I googled celiac specialist and she wasn't because of what ive been through. I wanted my results to be sent to my pcp but nothing was sent.I have email copies.I did one zoom call with np with team member from celiac specialist in Nov 2025 and she asked me why I wanted to know why I wanted the celiac diagnosis so bad, I sad I don't, its my life and I need revalidaion because its affecting me.KB stated well it shows you are.I asked then why am I going through all this.I was labeled unruly. Its been a celiac circus and medical has caused anxiety and depression no fault to my own other than being born with bad genetics. How is it legal for medical professionals to gaslight patients that are with an ailment coming for help to be downplayed? KB put in my records that she personally spent 120min with me and I think the zoom call was discussing celiac 80 min ONE ZOOM call.SHE is responsible for not explaining to my pcp about celiac disease am I right?
    • Amy Barnett
      What is the best liquid multivitamin for celiac disease?
    • Jmartes71
      I've noticed with my age and menopause my smell for bread gives me severe migraines and I know this.Its alarming that there are all these fabulous bakeries, sandwich places pizza places popping up in confined areas.Just the other day I suffered a migraine after I got done with my mri when a guy with a brown paper bag walk in front of me and I smelled that fresh dough bread with tuna, I got a migraine when we got home.I hate im that sensitive. Its alarming these places are popping up in airports as well.I just saw on the news that the airport ( can't remember which  one)was going to have a fabulous smelling bakery. Not for sensitive celiacs, this can alter their health during their travel which isn't safe. More awareness really NEEDS to be promoted, so much more than just a food consumption!FYI I did write to Stanislaus to let them know my thoughts on the medical field not knowing much about celiac and how it affects one.I also did message my gi the 3 specialist names that was given on previous post on questions on celiac. I pray its not on deaf door.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.