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Hello,

I'm upset to say I'm having some of my old celiac problems again. I've only been gluten-free for 3 months and it took about a month to finally see my bloating start to reduce. Lately all my symptoms have come back, the bloating, constipation, burping and fatigue. I never totally stopped eating dairy, but went dairy light and it seemed to be fine with it for a while.

The only other thing I did was totally clean up my kitchen finally and rearranged all the items in every cabinet and wiped down the insides real good. The one cabinet where I kept my wheat flour was covered in flour dust so I did spend some time cleaning that out thouroughly. I felt great with a lot more energy prior to cleaning out my kitchen. The next day I felt awful and tired and then came all these other symptoms. I tried to be extremely careful and I honestly find it so hard to believe that I could have these symptoms from flour dust, even though I've read about those of you who are so sensitive to gluten.

Could I really have been glutened from this cleaning or do you think dairy might be my problem? My endoscope showed "classic" celiac damage and he never waited for the biopsy to come back before he diagnosed me so I must have obvious damage. I didn't however, have any vitamin deficiencies so I must have been absorbing some nutrients.

Any help, advice, or suggestions is so much appreciated. I know you get some of the same questions over and over again and I truly thank those of you who take the time to help out those of us who are so baffled at first.

Joni


Joni

Dx'd with Celiac Disease 8/01/07

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Joni,

I don't know if this is similar to you, but... I had been gluten free for about a year when I started to have a problem with dairy. Four months later, I could handle it with no problem. Everyone is different.

Maybe, it took me about a year to settle down from the gluten when the dairy showed itself. Try to be dairy light and see if you feel better. The flour from the cabinet should get better within a few days is that is your culprit.


Lisa

Gluten Free - August 15, 2004

"Not all who wander are lost" - JRR Tolkien

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Hello,

The only other thing I did was totally clean up my kitchen finally and rearranged all the items in every cabinet and wiped down the insides real good. The one cabinet where I kept my wheat flour was covered in flour dust so I did spend some time cleaning that out thouroughly. I felt great with a lot more energy prior to cleaning out my kitchen. The next day I felt awful and tired and then came all these other symptoms. I tried to be extremely careful and I honestly find it so hard to believe that I could have these symptoms from flour dust, even though I've read about those of you who are so sensitive to gluten.

Could I really have been glutened from this cleaning or do you think diary might be my problem? My endoscope showed "classic" celiac damage and he never waited for the biopsy to come back before he diagnosed me so I must have obvious damage. I didn't however, have any vitamin deficiencies so I must have been absorbing some nutrients.

Joni

I was glutened by cleaning out my flour/wheat bread cupboard! When I started doing it, my hubby asked if I wanted his respirator. But, I foolishly said "no" and paid for it later that night. I had not eaten anything suspicious that day and had nothing to eat or drink right before the symptoms started. But, at least the cupboard is clean now.

That being said, it could be milk/casein too.

~Laura


Diagnosed by biopsy 2/12/07. Negative blood tests. Gluten-free (except for accidents) since 2/15/07. DQ2.5 (HLA DQA1*05:DQB1*0201)

Son, age 18, previously delayed growth 3rd percentile weight, 25th percentile height (5'3" at age 15). Negative blood work. Endoscopy declined. Enterolab positive 3/12/08. Gene results: HLA-DQB1 Molecular analysis, Allele 1 0201 HLA-DQB1 Molecular analysis, Allele 2 0503 Serologic equivalent: HLA-DQ 2,1(Subtype 2,5) Went gluten-free, casein-free 3/15/08. Now 6'2" (Over six feet!) and doing great.

"Great difficulties may be surmounted by patience and perseverance." Abigail Adams (1744-1818) 2nd First Lady of the United States

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Hey Lisa, thank you for that information. I will keep an eye out in case dairy seems to be bothering me. The thing is I have no immediate symptoms from consuming it so I didn't really think it could be the problem. I did switch to soy milk upon diagnosis, but I'm going to really try to stay away from dairy for a couple months. I'm only going to eat cheese and yogurt in moderation.

I think cleaning out the cupboards made me feel bad a couple of days, but I'm leaning more toward constipation. I hurt my calf muscle and haven't exercised in close to 2 weeks and I also have been eating more processed foods, less fiber. And the weather has become colder and I definately drink a lot less water the last couple weeks. The real clue is that I have no brain fog at all. I have been glutened in the past couple of months and always seem to get some form of brain fog. This time only bloating, gas, hard stools, and fatigue.

So...lots of water, fruits, veggies, flax seed, less processed foods, and starting back up exercise tomorrow! :rolleyes:

Thanks!


Joni

Dx'd with Celiac Disease 8/01/07

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I had been gluten free for about a year when I started to have a problem with dairy.

I seem to be having the same problem. Although, I did have a food allergy test done a couple months ago, and they told me I tested mildly positive for problems with dairy. Still trying to decide if I should go off it completely or try a lactaid pill. Dr said to try the pill first, then if not feeling better, go off dairy totally :(


Sweetfudge

Born and raised in Portland, OR; Currently living in Provo, UT

Gluten-free since June 2006

Also living with Hypoglycemia since 1991

Dairy-free for good since summer 2008

Started IBS diet and probiotics at GI's recommendation - Fall 2008

Also avoiding: potatoes, beans, crucifers, popcorn, most red meat, coconut milk :(

Started eating a Paleo diet Spring 2011. Love it!

The grass is always greener where you water it.

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Hi Joni (that's my name too!) :D

Maybe you are having a reaction to the soy milk. A few years back, I decided to stop using milk because I've always been lactose intolerant. I had been using lactose free milk with no problems, but thought, "I'm going to get extra healthy" & use soy milk because I'd heard all these great things about soy. Well, it ended up giving me such bad bloating & gas that I had to stop using it. Then I read up on how overly crazy processed soy is (esp. soy milk!) & it all made sense. It's weird because I seem ok with soy sauce & soy flours...just not the milk.

I'm sure that cleaning out your gluteny cupboard didn't help, but if your symptoms don't clear up, think about the soy milk. I use rice milk now so that I can stay away from the dairy. It tastes just fine. For a treat, I'll get some almond milk.

Hope you feel better soon!

best,

R.O. (aka Joni!)

I did switch to soy milk upon diagnosis, but I'm going to really try to stay away from dairy for a couple months.

never dx Celiac

dx IBS whole life

gluten free 9/12/07

husband:

blood test results negative

dx psoriatic arthritis 2005

psoriasis since childhood

gluten free 9/14/07

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Sweetfudge, I've been thinking about doing the allergy testing but I dread doing it. I know I shouldn't think that way, but I don't think I can handle another food problem head on right now. I keep trying to completely eliminate dairy and I'm finding it too hard so I went dairy light instead. I did just read that dairy can cause constipation, never realized that. Duh, my celiac symptoms have always been constipation.

Hey Joni!!! (love your name), I wondered about soy because I'm drinking it every day since going gluten free. I could try switching to rice milk. Do the regular grocery stores carry it (like Shoprite?). I can't imagine what you eat without eating dairy and soy. Soy is in everything! Do you make everything from scratch. I haven't even been able to get the gluten free recipes right yet.


Joni

Dx'd with Celiac Disease 8/01/07

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Yo Joni! :D

I haven't given up on soy completely. I'm pretty much just not able to drink/use soy milk. My husband has found that tofu makes his psoriasis flare up. But, we've eaten gluten free things that have some soy flour in them & haven't had the problems that we have with the soy milk & tofu. Maybe it's because they are so heavily processed with harsh chemicals - maybe it's the chemicals that we are reacting to?

I also still eat tamari (a wheat free soy sauce)...in a while I may try eliminating soy all together, but I'm still adjusting to the gluten free way of life.

I think you should give rice milk a try. It could give you relief. I buy mine at my regular grocery Jewel - it's affiliated with Albertsons. I've been told that the brand Rice Dreams is not 100% gluten free, so I steer clear of that brand. There's a thread on this forum about the labeling issues with Rice Dreams, I guess they use barley for flavoring.

I buy West Soy Rice Drink & it's good. I also buy the Whole Foods brand 365 when I shop there- which isn't too often because it's so expensive to shop there.

Also, I'm not 100% dairy free. I just don't use milk anymore...I cheat occasionally with butter and I don't really worry about things such as baked goods that use dairy in them. I don't have serious health problems such as chronic pain or autoimmune issues so I'm not as strict with my diet as some others are. I just listen to my body & try to figure out what makes me bloaty/gassy & then avoid those things.

Best of luck & feel free to pm me if you have any questions.

~Joni :D


never dx Celiac

dx IBS whole life

gluten free 9/12/07

husband:

blood test results negative

dx psoriatic arthritis 2005

psoriasis since childhood

gluten free 9/14/07

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Thank you, Joni :)

I never knew soy milk was so heavily processed. I'm doing more 'from scratch' baking all the time. I don't mind it when something comes out good :D

Glad to hear you can have soy in moderation. I'm not sure what my local grocery carries. I'll check there for some of the trusted brands you mentioned.

Luckily, I don't have serious problems either. I guess I'm just trying to be back to 100% ASAP!

Joni


Joni

Dx'd with Celiac Disease 8/01/07

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I had to give up dairy a week after going gluten free, never really had much problem with it before. It feels like gluten, same symptoms, when I have dairy of any sort. Now, 8 months gluten and dairy free, things are better.

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How do I know whether to go dairy free or dairy light? I do eat dairy every day - mostly cheese, parmasen cheese, and yogurt which I thought were pretty low in lactose.

And how much dairy can I have if I go dairy light? Once a day, every other day, once a week?

Thanks!


Joni

Dx'd with Celiac Disease 8/01/07

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Here is a link about lactose intolerance and milk allergy that was helpful to me in making the decision to cut out dairy completely.

http://www.scienceinafrica.co.za/2002/may/milk.htm

It's kind of an odd source but does a good job explaining things I thought. Hope it helps.

I was told as a child that I had a milk allergy but have always seemingly gotten away with a certain amount or kinds and used lactaid as well. For reasons I won't go into I often questioned whether I had an allergy and should really eliminate it. This page shows the varying degrees and types of reactions with a true milk allergy. I clearly fit into one of the allergy types and and have cut it out completely in order to get relief from my symptoms(I'm tired of the big D and know it's not from gluten anymore) as well as eliminate one more stress on my immune system. I don't suffer with dairy like I do with gluten so it was a hard decision to make.


Me: GLUTEN-FREE 7/06, multiple food allergies, T2 DIABETES DX 8/08, LADA-Latent Autoimmune Diabetes in Adults, Who knew food allergies could trigger an autoimmune attack on the pancreas?! 1/11 Re-DX T1 DM, pos. DQ2 Celiac gene test 9/11

Son: ADHD '06,

neg. CELIAC PANEL 5/07

ALLERGY: "positive" blood and skin tests to wheat, which triggers his eczema '08

ENTEROLAB testing: elevated Fecal Anti-tissue Transglutaminase IgA Dec. '08

Gluten-free-Feb. '09

other food allergies

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I am sorry to hear that you are having problems.

For me.. dairy showed up first, then gluten. 20years ago..and I have never been able to eat dairy again. I can eat Aged Cheese (b/c it no longer has lactose) and lactaid milk in small quantities.

It may be a good idea to rule out dairy.

I don't know if this is fact, but I was told 20years ago by a doc that the lactase enzyme sits on the tip of the villi, so if the villi is damaged from celiac, it is very unlikely that lactose will be tolerated.

In children, it almost ALWAYS comes back, in adults it is about 50 50 to return.

Hope you can figure it out.


Living Gluten free since 1989

4 kids

3 Celiacs (biopsy confirmed)

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Thank you for such great information and support. I am very dairy light right now and do have a plan to tackle my dilemma. Dairy free for 1 week, then soy free. I did just give up coffee less than 2 weeks ago and I'm finding that the teas I'm drinking are bothering my stomach. I only add honey to them so I'm experimenting with that too.

Today is day 1 dairy free. I'll let you know how I make out with it!


Joni

Dx'd with Celiac Disease 8/01/07

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It is possible to go both dairy and soy free, if you have to.

I'm commenting because you mentioned teas bothering you. Which ones? Some have gluten. I discovered to my distress that two that I was using are in that category. Now I use products from the Republic of Tea which is a certified gluten-free establishment and I know I won't have problems. Here is a list of gluten-free beverages, which lists some teas as OK or not:

http://www.glutenfreeforum.com/index.php?a...d=27&cat=55


McDougall diet (low fat vegan) since 6/00

Gluten free since 1/6/07

Soy free and completely casein and egg free since 2/15/07

Yeast free, on and off, since 3/1/07 -- I can't notice any difference one way or the other

Enterolab results -- 2/15/07

Fecal Antigliladin IgA 140 (Normal Range <10 units)

Fecal Antitissue Transglutaminase IgA 50 (Normal Range <10 units)

Quantitative Microscopic Fecal Fat Score 517 (Normal Range <300 units)

Fecal anti-casein (cow's milk) IgA antibody 127 (Normal Range <10 units)

HLA-DQB1 Molecular analysis, Allele 1 0501

HLA-DQB1 Molecular analysis, Allele 2 06xx

Serologic equivalent: HLA-DQ 1,1 (subtype 5,6)

Fecal anti-ovalbumin (chicken egg) IgA antibody 11 (Normal range <10 units)

Fecal Anti-Saccharomyces cerevisiae (dietary yeast) IgA 11 (Normal range <10 units)

Fecal Anti-Soy IgA 119 (Normal Range < 10 units)

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It is possible to go both dairy and soy free, if you have to.

I'm commenting because you mentioned teas bothering you. Which ones? Some have gluten. I discovered to my distress that two that I was using are in that category. Now I use products from the Republic of Tea which is a certified gluten-free establishment and I know I won't have problems. Here is a list of gluten-free beverages, which lists some teas as OK or not:

http://www.glutenfreeforum.com/index.php?a...d=27&cat=55

This morning I had Celestial Seasonings Decaf Honey Cahmomile Green Tea (says gluten free on the label) for the first time. This definately hurt my stomach. Ingredients: Decaf Green Tea, Chammomile, Natural Honey flavor with other natural flavors (contains SOY lecithin), and honey. The only other thing I had this morning was Bob's Mighty Tasty GLuten Free Cereal mixed with water - Ingredients: Whole Grain Bown Rice, Corn, White sorghum, Buckwheat.

I just don't think that dairy is the problem. I could go soy and dairy free, but that must be very hard.

Thanks for the link.


Joni

Dx'd with Celiac Disease 8/01/07

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I don't find it that hard, except at restaurants. But I manage to find ways to eat out. At home, I just use a different type of milk (rice, almond, hemp). I avoid any number of things, but I have more recipes than I can conceivably try. The foods I can eat far outweigh the foods I can't, or don't want to.

It probably isn't the soy lecithin, since most who are soy sensitive can handle that (it is supposed to not have any of the protein left after the processing). But I know some people do react to it.

I wonder if it is something else in the "natural" flavors you have difficulty with. Such things can contain MSG, for instance. http://www.truthinlabeling.org/hiddensources.html I try to stay away from ingredients I don't really understand. Natural flavors aren't really natural; they just get manufactured out of an originally natural source. I wish I had the link when I was looking up some particular such flavor. The description of what it was turned out to be rather appalling.

You also could be sensitive to honey or camomile. Do you happen to have hay fever? I was doing a little googling and found that such folks can have problems with these products:

http://www.ncbi.nlm.nih.gov/sites/entrez?d...;indexed=google

I know, it is aggravating trying to sort all this out, isn't it? There always seem to be multiple possibilities. CC? Or maybe something in the cereal ... It is almost enough to make you do an elimination diet. I've never gotten that desperate yet, though.


McDougall diet (low fat vegan) since 6/00

Gluten free since 1/6/07

Soy free and completely casein and egg free since 2/15/07

Yeast free, on and off, since 3/1/07 -- I can't notice any difference one way or the other

Enterolab results -- 2/15/07

Fecal Antigliladin IgA 140 (Normal Range <10 units)

Fecal Antitissue Transglutaminase IgA 50 (Normal Range <10 units)

Quantitative Microscopic Fecal Fat Score 517 (Normal Range <300 units)

Fecal anti-casein (cow's milk) IgA antibody 127 (Normal Range <10 units)

HLA-DQB1 Molecular analysis, Allele 1 0501

HLA-DQB1 Molecular analysis, Allele 2 06xx

Serologic equivalent: HLA-DQ 1,1 (subtype 5,6)

Fecal anti-ovalbumin (chicken egg) IgA antibody 11 (Normal range <10 units)

Fecal Anti-Saccharomyces cerevisiae (dietary yeast) IgA 11 (Normal range <10 units)

Fecal Anti-Soy IgA 119 (Normal Range < 10 units)

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No not even almost! I'm scared horribly with this. I'm still learning gluten-free and newly caffeine free. It's ok when I can substitute, but now that teas seem to be bothering me...There does seem to be a huge amount of possibilities. I keep trying to do dairy free, but am not being successful. Maybe I can get serious after Thanksgiving. It's too much too soon for my brain to handle right now.

Yes, I do have hay fever in the fall (never diagnosed) but always stuffy and had to take allergy medications...well I thought that's what it was but now that I've been gluten free this fall I never had any symptoms and haven't used my allergy meds but a handful of times.

Soy is in all the things I eat, especially the condiments and salad dressings. Do you have to make your own dressings? What about mayonnaise?

I was supposed to go the my GI Doc on Nov. 29th, but they had to change my appointment so it's now in January. I might ask him about allergy testing.

An elimination diet is frightening. On one site, you couldn't have any meat at first. It seemed like all veggies and fruit. I'm so afraid to do something that drastic to my diet. My problems don't seem to be that bad.

I did see an old thread about cc with Celestial Seasonings Tea because some are gluten-free and some not and they are made on the same lines. Could be a possibility. I emailed the company and asked, but haven't received a response yet. I've never seen the tea you mentioned. I love the idea of the whole line being gluten free. Do you get that in regular grocery stores or specialty stores?


Joni

Dx'd with Celiac Disease 8/01/07

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About salad dressings -- I am low fat too so that limits me. My favorite FF balsamic vinagrette had soy sauce in it and others have seemed kinda strangely flavored. Perhaps chemical-y things now taste that way to me? Anyway, mostly I pick different flavored vinegars and sprinkle a little on. I have quite a collection at this point. Now if I get an oil-and-vinegar dressing in a restaurant it seems greasy. I've seen recipes for dressings without dairy or soy, but I am too lazy to make them. Besides, I am perfectly happy with what I do now.

I can't tolerate eggs at all, so mayonnaise is out.

For condiments generally, I have a wide collection of salsas & hot sauces. I also have quite a selection of spices and spice blends. I haven't had a problem giving my dishes flavor, in other words. The one thing I've yet to figure out is a good sub for soy sauce. I've seen a recipe using balsamic vinegar & molasses, but I've been told by someone who tried it that it was nasty. I've heard there is a miso based on chick peas, but I haven't found it locally (and again, someone told me it was nasty). I'm thinking ume plum vinegar may work, perhaps in combo with balsamic. (With veggie sushi, I just put some straight wasabe on top.) I don't follow a plant-based diet for ethical reasons, so I don't have a problem with asking Asian restaurants to use fish sauce instead of soy sauce. Assuming I can trust them when they say that their version doesn't have wheat in it <_<

Since I don't eat meat generally (exception being vacations when I would otherwise starve in the location I find myself in), it doesn't seem that drastic to me. But I ate that way for over six years before the gluten and soy problems were made clear to me. My health did improve when I took out the animal products and it also appeared from my research that this was the best diet for helping to prevent the health problems common in my family. I'm the only one not seeing multiple doctors and taking multiple pills, not to mention the only one with normal weight. Naturally I'm the oddball with my "crazy diet." It is much more rational to take a bunch of pills and complain about your health and the way doctors and insurance companies treat you.

OK, rant over. I'm not trying to convert anyone. We can only do our own research and try to find out what makes sense to us -- and hope that works on our bodies too. I think I'm getting this out of my system before I see my relatives this weekend :lol:

I've found the Republic of Tea brand in both Whole Foods and my neighborhood natural food coop. I think I've seen it for sale near the coffee shops in either Borders or Barnes & Noble but I don't know for sure. Their packaging is somewhat different, being tall cans. You can always order online if some flavor catches your fancy and you can't find it.

(You'll see they have some flavors that are supposed to be health promoting, like "get charged" for energy and "get soothed" for scratchy throats. The ones that crack me up every time I see them are "get it going" for regularity and "get a grip" for PMS/menopause. :lol: Then I'm menopausal so maybe my sense of humor is sort of warped right now. This is a complicating factor for me. I never know if something I am experiencing is diet related or due to menopause.)


McDougall diet (low fat vegan) since 6/00

Gluten free since 1/6/07

Soy free and completely casein and egg free since 2/15/07

Yeast free, on and off, since 3/1/07 -- I can't notice any difference one way or the other

Enterolab results -- 2/15/07

Fecal Antigliladin IgA 140 (Normal Range <10 units)

Fecal Antitissue Transglutaminase IgA 50 (Normal Range <10 units)

Quantitative Microscopic Fecal Fat Score 517 (Normal Range <300 units)

Fecal anti-casein (cow's milk) IgA antibody 127 (Normal Range <10 units)

HLA-DQB1 Molecular analysis, Allele 1 0501

HLA-DQB1 Molecular analysis, Allele 2 06xx

Serologic equivalent: HLA-DQ 1,1 (subtype 5,6)

Fecal anti-ovalbumin (chicken egg) IgA antibody 11 (Normal range <10 units)

Fecal Anti-Saccharomyces cerevisiae (dietary yeast) IgA 11 (Normal range <10 units)

Fecal Anti-Soy IgA 119 (Normal Range < 10 units)

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