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Tigercat17

Casein Intolerance Or Glutening?

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Hi everyone,

I really need some help. I was hoping someone could help me figure this out. I'm wondering if I have a casein intolerance or if I'm getting gluten somewhere? I'm still having acid reflex occasionally & this was my main symptom when I was first diagnosed. Last Sept I had serve acid reflex & I completely lost my voice for 6 weeks and contiuined to have a horrible sore throat for three months after. I did give up milk for a while & I noticed my throat felt a little better. After about three months of gluten free I started to add milk back into my diet & I felt okay with it, but still had some acid reflex once in a while but I just dealt with it, because I Love milk! Now the acid reflex is worse lately & I'm wondering if I'm getting gluten somewhere. This is so frustrating. I checked everything & even took some "suspecting food items" out of my diet for a while to see if I felt better.

Also, I did have my antibodies tested a month ago & they did go up- They went for 45 to 60. I know I was getting glutened during this time. And I felt horrible too. I suspect it was an old McCormick Chicken Seasoning. It was at least three years old. I used it once & thought I didn't have any reactions to it so it must be safe, but then I started to feel horrible again -sore throat, stomach tenderness & my right foot hurt so bad I even mentioned it to my doctor. I feel better than I did a month ago, but I still think I'm getting some cross contamination some where.

I have a gluten free kitchen also. But I wonder if it truly is gluten free since my hubby works at a pizza shop. He does wash his hands after work & changes clothes but I wonder if he isn't carrying in some flour in the house once in a while? Any thoughts?

Anyway, here is my usual diet. I know it's pretty boring, but right now I'm so afraid to add anything new.

Nature Path maple sunrise cereal OR ( I really suspected it was one of these cereals too)

Glutino Honey nut cereal OR

Arrowmills Buckwheat cereal (with fresh fruit)

Boost

Breyer's yogurt or Yoplait

Lunch meat- Oscar mayor or Hillshire Farms -Turkey or Ham

Wholefoods Tuna

Rainbow Light Calcium (vitamin)

Snapple Iced Tea -Peach ( I suspected this Ice Tea also & still not sure)

Snapple Green Tea -Peach

Fresh fruit

Sargento Cheddar or Swiss Cheese

Miracle Whip

Glutino Pretzels

Lays Stack

Endangered species dark chocolate- cranberry

Lara Bars OR

Purfit Bars

I always cook fresh meat & I use a lot of McCormick seasonings

Fresh veggies or I use Birds Eye when I don't have time

Fresh salad with Kraft Dressings or Wishbone

Potatoes OR Rice OR Ancient Harvest Quiona OR Tin. Pasta

Breyer's Ice Cream

Vitamins- Megafood Bloodbuilder & Multivitamin ( I did stop the vitamins for three weeks but I felt no different)

Also, I recently had blood work done for all the common food allergies & everything came back negative -even milk & wheat? I was really surprised. Does anyone know if I could still have a casein intolerance & have negative blood work results?

I was thinking of taking milk out of my diet again even though I Love milk. Which really sucks. I had some bad experiences with milk replacements in the past & I know I got glutened from one of them. It was the Almond Dream.

Does anyone know of some good gluten free milk replacement? Does anyone know if Silk soy milk is still gluten free and Blue Diamond Almond Milk? (Sometimes I just don't trust some companies when I call to ask)

Sorry this is so long. I REALLY DO appreciate all the help! Thank-you!

This disease drives me crazy! :(


Lisa

Infertility since 1995/Endometriosis

Hasimoto Thyroid disease 1998

Enlarged Abdominal Lymph nodes since 2003 - Stable

Thyroid Hurtle Cell Cancer 2008 Stage 1- Total Thyriodectomy 2008

Anxiety/Depression/Insomnia/Fatigue - Gone with gluten free diet

Acid reflux -LPR 7-2009 - Gone with a Strict gluten free diet

Celiac disease - positive upper endoscopy & Blood Test 9-2009

Undiagnosed celiac for 20 years - Gluten free since 9-13-09

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If you decide to "remove" casin you might want to go so far as remove lactose. I went lactose free and have been feeling so much better. There are tons of choices on the market. I like Turtle Bay products...the coconut milk ones not the soy (I am allergic to soy). I am by no means a doctor and stress that you should talk to your doctor and express your concerns. There are tons of "elimination" diets on the market and with his approval and monitoring it might help to try one of these.

Your menu lists a lot of "dairy" and processed meats. Lunch meat can have Gluten in it. I try to avoid it as much as possible.

Good Luck


Char

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Your menu lists a lot of "dairy" and processed meats. Lunch meat can have Gluten in it. I try to avoid it as much as possible.

Good Luck

Another thing to consider, Is the lunch meat fresh cut @ the deli???

I'm a New Man Without GLUTEN!

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One thing that stuck out to me was the tuna. I don't know about Whole Foods tuna, but I stopped buying tuna, because every brand I checked said that it was processed in a facility that processed wheat.

The other thing you could check as far as gluten goes is the ice cream. I called Breyers several months ago and what ever answer they gave me about cross contamination didn't seem quite safe enough to me so I stopped buying their products. I don't remember what they said specifically and I have to admit that I seem to air on the extra careful side of things.

I also seem to remember that some lay's products were not safe when I checked, probably about six months ago, but again I can't remember which were the safe ones and which were not.

The only other thought I had is that it seems from your blood test that it's very likely that gluten is the problem in this case and not dairy. I would try calling companies of all of the foods you eat regularly that could possibly have some CC and find out about that before you take dairy out of your diet.

I hope you can solve this mystery.

~Sarah

PS. OH! I just thought of this. Does your hubby take a shower as soon as he gets home and brush his teeth and wash out his mouth really well before kissing you? Flour is so fine it could be on his skin and you could be getting CC directly from him. -Just a thought!

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Your diet would work for me and I'm pretty sensitive. Have you made sure Boost is completely gluten-free?

Yes, you can have negative blood work and still be intolerant to a food. The only way to tell for sure is to remove it from your diet for a while. Some celiacs are cross-sensitive to casein and it does cause the autoimmune damage in those few people. Other folks just don't tolerate casein well until they've been gluten-free a while. Your antibodies are still up up so your gut hasn't really healed.

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I would suggest removing both soy and dairy for a while. Completely. You should also go with a more unprocessed foods. The Endangered chocolate bars got me a couple times and they do not say they are gluten free. The cereals other than the Glutino could be CC'd in the plant. If your lunch meat is not bought at the deli dept they should be okay. I have problems with salad dressings, the kind you pour over a salad and I stick with Wegmans because I am lucky enough to live in an area that has one. I haven't checked to see if any other brands use gluten grain distilled vinegar because I know if the Wegmans brand has a G it doesn't. I am one of the rare celiacs that react to distilled grains. I avoid Sargento cheese, I have had problems with them so I stick with Kraft. I wasn't able to find a listing of the actual ingredients the vitamin you take are derived from so I would maybe consider switching to a brand like Country Life or Now. They are both for sure safe.

The suggestion to have hubby change clothes and shower after work is also a good one. You know you have gluten sneaking in so also check your topicals, shampoos etc and what are you taking for your stomach pain? Not all of the stuff for stomach is safe. Pepto Bismal liquid is very helpful for me, name brand, for the times I get glutened.

Going back to more whole unprocessed foods may help.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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That's for all the suggestions everyone. I am just feeling so disgusted with this disease. Just when I think I feel better, I start not feeling good again. I do really think I'm still getting some gluten somewhere. I've been gluten free for 10 months now & my antibodies still are high. They were 167 when I was diagnosed & last month 60. Shouldn't they be lower than that after 10 months of gluten free? I've read it takes a year or so for the antibodies to go down. Is that true?

My dietitian suggested to try to remove one thing at a time from my diet to see what was still glutening me. He has celiac also for 10 years now. He looked over my food diary and is not sure where I'm still getting gluten from either. I think I might let go of the Nature Path cereal for now. I really think that is getting me. And it sucks because I really like it a lot. I'm just so frustrated & confused. I feel like I can't eat anything. I've been studying my food diary like crazy & looking for anything that changed in the last two months. I was feeling pretty good a couple months ago.

I'm not sure about asking my husband to shower after work? He's just going to think I'm crazy... He already thinks I'm overreacting about asking him to wash his hands after work.

I have started making some phone calls, but the company reps. only tell you so much. It's frustrating...

I haven't tried lactose free milk but I was thinking about trying it this week & then go from there. I'll have to study my food diary some more & just try to eat more unprocessed foods.

And for the lunch meat, I don't get it at the deli. I always buy it in the package.

I think I'll stop buying the sargento cheese & switch to Kraft, too. I don't use any over the counter products for my stomach. It's really not that bad. It just feels a little irritated all the time. I really thought it was the vitamins too. I did try Country life for a couple of days & my acid reflex got worse so I stopped them right away. I don't think I had a gluten reaction to them they just really upset my stomach. It was the Country life Calcium. I'm really thinking of giving up all my vitamins. You just don't know what they're putting in them.

Oh I forgot to add that I do eat Udi's bread everyday. But I haven't heard of anyone having gluten problems with it so I really think it's pretty safe.

I guess I just have to make some more changes...I hate this disease. :(


Lisa

Infertility since 1995/Endometriosis

Hasimoto Thyroid disease 1998

Enlarged Abdominal Lymph nodes since 2003 - Stable

Thyroid Hurtle Cell Cancer 2008 Stage 1- Total Thyriodectomy 2008

Anxiety/Depression/Insomnia/Fatigue - Gone with gluten free diet

Acid reflux -LPR 7-2009 - Gone with a Strict gluten free diet

Celiac disease - positive upper endoscopy & Blood Test 9-2009

Undiagnosed celiac for 20 years - Gluten free since 9-13-09

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I'm a complete noobie when it comes to Celiac. But what I'd suggest, is to get back to the absolute basic whole foods for a week, and slowly one at a time, over a period of a few days each, re-introduce the processed items and see what's causing the problem?

If you don't feel good after a week (or whatever time frame you feel is needed) of basic foods, then it must be coming from hubby or another cause?

If you feel better after a week, then it's definately some CC from an item.


Feb 2010 - Start of continuous GIT problems and panic attacks

July 2010 - Blood and biopsy -ve, went gluten free after testing which completely relieved symptoms

July 2011 - 1 year gluten free, food intolerances (Chicken, eggs, olives, goat milk) gone!

2012 - Soy no longer a problem

*************************************************************

Gluten intolerant

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Have you made sure Boost is completely gluten-free?

Boost is gluten free, I drink it a couple times a day. BUT it is pretty much pure corn syrup and casein. If there is an intolerance to corn or casein, Boost will definitely make you sick!!


Gluten Free since October 2009

If evolution really works, how come mothers only have two hands?" - Milton Berle

"Life is 10 percent what happens to me and 90 percent how I react to it."--Lou Holtz

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Don't give up your calcium and D. Osteoporosis is a serious problem with celiac disease. You might try Citracal. It's gluten-free and supposed to be really good. I find that taking vitamins and minerals with a meal really helps, plus you're supposed to absorb them better with food.

http://bayerhearts.com/product/tablets-caplets.aspx

If you just cant find a calcium pill you tolerate well, most of the Tums are gluten-free so you can get a little extra calcium that way. They don't have the vitamin D, but if anything they soothe reflux.

http://www.tums.com/faq_tums.aspx

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Dairy is a common reflux trigger. I'd encourage you to give it up, and if it helps, keep off of it. I know it sucks (dairy free is harder than gluten free, for me), but your health is worth it. There are other things in life to enjoy.


Tiffany aka "Have I Mentioned Chocolate Lately?"

Inconclusive Blood Tests, Positive Dietary Results, No Endoscopy

G.F. - September 2003; C.F. - July 2004

Hiker, Yoga Teacher, Engineer, Painter, Be-er of Me

Bellevue, WA

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Dairy is a common reflux trigger. I'd encourage you to give it up, and if it helps, keep off of it. I know it sucks (dairy free is harder than gluten free, for me), but your health is worth it. There are other things in life to enjoy.

Yes, I agree! I'm lactose free (pretty bad lactose intolerance) but I tolerate casein fine, so I'm lucky. I can still have cheese and lactose free products. I think I might lose my mind if I had to give up all dairy! That actually stresses me out more than going gluten free...weird.


Gluten Free since October 2009

If evolution really works, how come mothers only have two hands?" - Milton Berle

"Life is 10 percent what happens to me and 90 percent how I react to it."--Lou Holtz

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I'd say get rid of the soy and dairy also. And the processed foods, cereals etc. At least for a few weeks. You can get calcium from veggies also. Wait until you feel better then add things one at a time.


Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."

Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.

Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, eggplant, celery, strawberries, pistachios, and hard work. Have a good day! 🙂 Paul

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Okay, phew...you've got a lot of advice, awesome!

One word on your husband. Does he eat gluten and Do you kiss him? If the answer to both of those is yes, that could be your gluten source. I've done it myself! Also, if he's wondering why washing hands or showering might be a big deal? Ask him how he'd feel if you came home from work coated in raw cow's blood, and then proceeded to touch everything around you, sit on the furniture, hold his hand. Because all that bacteria and the damage it could do to HIM is a good analogy to what all the gluten on him and his clothes could do to you.

Re: your high numbers. My thoughts would be that 1) you could still be getting gluten somewhere, 2) You could be reacting to the dairy, like you're thinking, or some food you haven't considered yet, or 3) you are more sensitive than the average celiac, so things that test as 'gluten free' may still have enough gluten traces to zap you.

The latter would be me, and my household has to be dairy and gluten free. :-)

One sad rule of thumb for us has been this: any company that isn't confident enough of their gluten free status to put it on the food label - assume it's not gluten free. If you are sensitive enough, it probably isn't. Maybe it has no gluten ingredients, or not gluten used on the line, but there can also be gluten used on something made in the same room, that poofs in the air, may settle on the machine used for YOUR food. Or there aren't any cross-contamination protocols in place for workers who work on the gluten and non-gluten lines, etc... Having gluten-free on the label helps them sell more. If they don't have it on there, THEY are not totally sure it's gluten free. At least not sure enough to risk a law suit.

And even if they DO have gluten free on the label, that just means it has less than a certain amount of gluten. Which can still be enough to gluten you if you are sensitive.

That said, if you want to try to stick to the gluten free stuff, at least at first, before rushing off to make everything from scratch (which is what I ended up having to do), here's what would get me on your list (I'll ignore the obvious dairy, eh?):

Cereals - everything but the glutino would get me, although I haven't tried that one for other reasons.

lunch meat - bad for dairy and gluten, both. Gets me all the time.

Tuna - bad for dairy and gluten, both

fresh fruit - if it's been pre-cut at the store, that's been contaminated for me before, for dairy or gluten

Any vitamin that doesn't put gluten free or dairy free on the label is likely bad.

Drnks - we've had a lot of problems with different drinks, especially if they don't say gluten free.

Cheese - same thing. Does it say gluten free? If not, you need to find out where it was cut up into blocks, for example. Was it cut on the same line as cheese with gluten (like a nice bleu cheese, for example). Could be contaminated.

MIracle whip - never tried it, but I'd be worried.

chips - almost ALL chips have gotten us. I know the Staxx are on a gluten free line, but I don't know if they are in a gluten free area of the facility

The bars - I'd be concerned.

mcCormick seasonings - I'd be concerned about cross-contamination. There are brands that are gluten free that might be better. Anything in a packet, or a mix? That gets us every time.

Kraft dressings - they've gotten us

Breyer's ice cream - they are nominally gluten free, but I think we've been zapped a few times.

Potatoes OR Rice OR Ancient Harvest Quiona OR Tin. Pasta - these we've actually done okay with, LOL

Oh, re: the allergy test? It doesn't test for casein intolerance at all, actually. That requires a breath test. For other intolerances, there IS no test. It's all trial and error, food diary, consulting with doctors and your own body. So you could totally be intolerant to dairy and have a negative allergy test. Also, if you haven't healed completely, you should be off of dairy, anyway. Most people ARE slightly dairy intolerant until they are fully healed.


T.H.

Gluten free since August 10, 2009.
21 years with undiagnosed Celiac Disease

23 years with undiagnosed sulfite sensitivity

25 years with undiagnosed mast cell activation disorder (MCAD) 

 

Daughter: celiac and MCAD positive

Son: gluten intolerant
Father, brother: celiac positive

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