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Gluten Free And Still Have Werid Symptoms

chili

By chili
in Coping with Celiac Disease

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chili Apprentice
chili
Posted

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!!!!

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dilettantesteph Collaborator
dilettantesteph
Posted

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
eatmeat4good
Posted

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
chili
Posted
  • Author

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
Jestgar
Posted

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
kwylee
Posted

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
eatmeat4good
Posted

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.

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IrishHeart Veteran
IrishHeart
Posted

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
chili
Posted
  • Author

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
kwylee
Posted

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
ndw3363
Posted

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
kwylee
Posted

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
Cloelke
Posted

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
sandsurfgirl
Posted

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.

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

      By trents · Posted

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

      By catnapt · Posted

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

      By trents · Posted

      Welcome, @catnapt! The most recent guidelines are the daily consumption of a minimum of 10g of gluten (about the amount found in 4-6 slices of wheat bread) for a minimum of two weeks. But if possible stretching that out even more would enhance the chances of getting valid test results. These guidelines are for those who have been eating gluten free for a significant amount of time. It's called the "gluten challenge".  Yes, you can develop celiac disease at any stage of life. There is a genetic component but also a stress trigger that is needed to activate the celiac genes. About 30-40% of the general population possesses the genetic potential to develop celiac disease but only about 1% of the general population actually develop celiac disease. For most with the potential, the triggering stress event doesn't happen. It can be many things but often it is a viral infection. Having said that, it is also the case that many, many people who eventually are diagnosed with celiac disease probably experienced the actual onset years before. Many celiacs are of the "silent" type, meaning that symptoms are largely missing or very minor and get overlooked until damage to the small bowel lining becomes advanced or they develop iron deficiency anemia or some other medical problem associated with celiac disease. Many, many are never diagnosed or are diagnosed later in life because they did not experience classic symptoms. And many physicians are only looking for classic symptoms. We now know that there are over 200 symptoms/medical problems associated with celiac disease but many docs are only looking for things like boating, gas, diarrhea. I certainly understand your concerns about not wanting to damage your body by taking on a gluten challenge. Your other option is to totally commit to gluten free eating and see if your symptoms improve. It can take two years or more for complete healing of the small bowel lining once going gluten free but usually people experience significant improvement well before then. If their is significant improvement in your symptoms when going seriously gluten free, then you likely have your answer. You would either have celiac disease or NCGS (Non Celiac Gluten Sensitivity).
    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      after several years of issues with a para-gland issue, my endo has decided it's a good idea for me to be tested for celiac disease. I am 70 yrs old and stunned to learn that you can get celiac this late in life. I have just gradually stopped eating most foods that contain gluten over the past several years- they just make me feel ill- although I attributed it to other things like bread spiking blood sugar- or to the things I ate *with* the bread or crackers etc   I went to a party in Nov and ate a LOT of a vegan roast made with vital wheat gluten- as well as stuffing, rolls and pie crust... and OMG I was so sick! the pain, the bloating, the gas, the nausea... I didn't think it would ever end (but it did) and I was ready to go the ER but it finally subsided.   I mentioned this to my endo and now she wants me to be tested for celiac after 2 weeks of being on gluten foods. She has kind of flip flopped on how much gluten I should eat, telling me that if the symptoms are severe I can stop. I am eating 2-3 thin slices of bread per day (or english muffins) and wow- it does make me feel awful. But not as bad as when I ate that massive amnt of vital wheat gluten. so I will continue on if I have to... but what bothers me is - if it IS celiac, it seems stupid for lack of a better word, to intentionally cause more damage to my body... but I am also worried, on the other hand, that this is not a long enough challenge to make the blood work results valid.   can you give me any insight into this please?   thank you
    • trents
      Accuracy of testing concerns

      By trents · Posted

      The biopsy looks for damage to the mucosal lining of the small bowel from the inflammation caused by celiac disease when gluten is ingested. Once you remove gluten from the diet, inflammation subsides and the mucosal lining begins to heal. 
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