New To This Forum, Hello

[JLK]

Hi everyone,

[i started this as a response under the topic Replying to Weird Question, the bloating and frequent urination topic, but after typing so much I thought it best to start a new thread.]

Soooo, I am not alone with this frequent peeing and it certainly could be related to my body's attempt to rid itself of the gluten. I have always been a frequent urinator, so much so that road trips are very uncomfortable and my husband used to get all bent out of shape when I'd have to stop again! He is more understanding now.

OK, short intro here. Always have had the following-

nausea

frequent urination

hypoglycemia

respiratory system allergies

hard time sleeping

guaranteed to catch every cold virus out there (to the point of being sick with a cold for 7+ months a yr)

8yrs ago moved from NE to SW to get away from winters and colds. Other than the above, seemed to be in fairly good health and great shape. Stopped eating a lot of junk food, went on Atkins diet for yrs (cut carbs dramatically). Had enough energy for grad school and lots of mountain climbing/hiking, biking, etc, living life well.

5yrs ago sustained injury to my neck and small back; Dx disabling cervical radiculopathy that didn't seem to get any better with the time off. Chronic pain of an intensity I would not wish on an enemy. Doc has me on oxycontin.

2yrs ago Developed asthma from raging wildfire smoke. Started Dr. D'Adamo's Blood Type Diet (highly recommended, www.dadamo.com ) and personalized yoga. Saw improvements with breathing issues and complexion clearing up. Started sleeping better, somewhat. Yoga helps with the neurological symptoms from the bulging discs in my neck and stretching helps with the low back.

1yr ago went gluten-free after a few very scary episodes from eating 1st, a sandwich made with "low carb bread"--(first ingredient on the label, wheat gluten!! What's gluten I asked myself...) and 2nd, from half a beer and a few rye crackers. I initially thought I had an allergy to wheat but then the rye crackers and stout convinced me that I was gluten-sensitive. (I had given up beer about a month prior to the rye cracker episode but had found a wheat-free oatmeal stout...)

Both times I was bed ridden for a few days and not fully recovered for a few weeks. Then shortly after going gluten-free, I discovered my problem with dairy. Since I had been following the Blood Type Diet, I knew cow's milk products (except butter, butter is OK because it is separated from the protein) were not good for me, but I had never reacted to any. It is amazing how going off a food you don't know you don't tolerate well can wreak havoc when you do eat some later. I used to eat a pint of Haagen Daaz every day!

About 3yrs ago, before going gluten-free, I was Dxed with hematuria--blood in my urine. Not a lot, but always there. I am sure now that the gluten I have eaten most of my life is the cause and hopefully my bladder will heal along with my intestines.

Now to the present. I was glutened while traveling two months ago and still am not quite right again. It was half of a bite of flour-coated sirloin tip (menu said au jus). But I think I must still be getting gluten in my system since it has been over 2 months and my stomach is still quite upset. If I had insurance or money!, I'd get some blood work done looking for nutrient deficiencies, and would consider the biopsy just to know how much damage there is. Or there may still be other food intolerances I have yet to discover. I am considering an elimination diet but I have already eliminated so many things. I question whether eggs and soy are now a problem too. Egads. Where does it end?!

Without the monetary resources, I really am not sure what to do next other than keep adjusting my diet and hope I understand what my body tells me! I take some supplements, but definitely not the recommended amounts--they can make me nauseous too (although the ones I get from the Blood Type Diet store are much gentler than the high priced health food store ones).

I know this will get easier with time but I feel pretty overwhelmed. I am afraid to eat out anymore at all. Luckily I don't live near family (!); I'd like to figure it ALL out and then share my food requirements with my family--don't want to confuse them with a highly complex diet that changes too!

I do have a few questions if you don't mind reading a bit further...

1) Is there a correlation between how sh*tty one feels from day to day, not right after being glutened, and the severity of the damage to the villi? I assume so since, conversely, we should feel better as we heal, once that healing has become significant enough to start alleviating symptoms at some threshold of recovery.

2) Can you trust all packaging that says its contents are gluten-free or do you have to check these out at the time they were made (lot number) with the producer in case they changed practices?

3) How to fill the hole quitting beer leaves in the beverage repertoire?! Any good gluten-free ciders? What about Hornsby"s by Gallo (I have been drinking it, but not for the past 4 days now, and can't get in touch with the brewery.)

Sorry for being so long winded. Thanks for reading!

Judi

[KaitiUSA]

1)  Is there a correlation between how sh*tty one feels from day to day, not right after being glutened, and the severity of the damage to the villi? I assume so since, conversely, we should feel better as we heal, once that healing has become significant enough to start alleviating symptoms at some threshold of recovery.

2)  Can you trust all packaging that says its contents are gluten-free or do you have to check these out at the time they were made (lot number) with the producer in case they changed practices?

3)  How to fill the hole quitting beer leaves in the beverage repertoire?! Any good gluten-free ciders? What about Hornsby"s by Gallo (I have been drinking it, but not for the past 4 days now, and can't get in touch with the brewery.)

Sorry for being so long winded. Thanks for reading!

Judi

<{POST_SNAPBACK}>

The severity of the damage can determine how bad you feel in some cases. In other cases some people just plain do not get symptoms but get alot of damage nonetheless.

When I am glutened usually it takes a good 2 weeks for the main reaction to end. The 7th day is usually the worst for some reason. Not everyone is the same though.

If a packaging says gluten free then it is gluten free. You my want to do a scan of the ingredients to make sure there is nothing obvious in it but you can trust that.

There are also some mainstream brands that will not hide anything on their labels, even under otherwise questionable ingredients. Those brands are listed numerous places on the site but if you would like me to post them on here or email them let me know.

The particular brands I am talking about will indicate gluten in the form of wheat,rye,barley,oats on the label.

Example: Kraft is one of the brands and they have something that says natural flavoring and modified food starch but nothing else so you assume you have to call them right? Nope, you don't because if it has anything we can't have in it it will say natural flavoring(wheat) or modified food starch(wheat) on it. They will not hide anything. There are quite few brands with that policy.

Can't really help on the alcohol thing...I'm only 18...I'm sure someone else can help with that.

Sounds like you have had it tough over the years...welcome to the board

[JLK]

Thanks Kaiti for the welcome and for some answers. And anyone who has gluten sensitivity has had it tough over the years However, I do envy all of you out there who were diagnosed early in life. The more health issues one has, the harder it is to figure out every deleterious contributor, like gluten! Another way to look at it is "how many of my health problems are due to eating gluten and what problems are not related to gluten?" That is the stage I am at. Since it takes so long for the healing once going gluten-free, for someone my age , it is hard to know when you've made all the positive changes necessary. My hematuria is a good example. Anyone out there have micro amounts of blood in their urine from eating gluten (or should I be looking for another cause)?! The urologist I saw (before going gluten-free) said my bladder was irritated and there was constant inflammation, which he attributed to a narrow urethra and that I should have it dilated (OUCH!!!! NO WAY!).

I have another question. My husband is pretty supportive but he is balking at the idea of having to buy new kitchen utensils, pots and pans... How necessary is this? Isn't there a way to clean teflon pans and plastic utensils well enough to get rid of any residual gluten? I can see that wood would be a material that could hold lots of gluten even after washing well. From what I have read, there are no such worries over glass or uncoated metals, right?

Thanks

Judi

Oh, for the sake of completeness and perhaps 'cause I'm compulsive... I also have had problems sleeping all of my life, but the insomnia has recently gotten a lot worse. There are times when I am settling in for the night when my breathing gets off rythym, like I am forgetting to breathe!!!! Very scary. Thought it was related to my asthma and doc put me on Advair--didn't help so I discontinued a few months ago.

[KaitiUSA]

I have another question. My husband is pretty supportive but he is balking at the idea of having to buy new kitchen utensils, pots and pans... How necessary is this? Isn't there a way to clean teflon pans and plastic utensils well enough to get rid of any residual gluten? I can see that wood would be a material that could hold lots of gluten even after washing well. From what I have read, there are no such worries over glass or uncoated metals, right?

Getting a new toaster and replacing things like teflon and wooden things are pretty essential.

Other things can be cleaned. Glass and uncoated metals will be ok if you clean them.

Also, you need separate butter, peanut butter, jelly and anything like that because of crumbs that can be left.

[watkinson]

Hi Judi,

I am sorry to hear all of your health problems. It may take some time but you can rest assured that you WILL feel better. It takes awhile for the villi to heal enough for you to absorb nutriets again. In the meantime...definately take a multi vitamin. Liquid if you can get it. Make sure you are getting enough iron, vitamin E, and vitamin B-complex. Try to get some excersise, it will help you sleep some what better.

The blood in the urine could be caused by damage to the stomach, stomache ulcers, or the damage done to the villi, causing inflamation. Did your doctors work on finding the source of the blood or just tell you you had blood in the urine?

You could see a cardiologist for the breathing. Maybe it's what I have. I can't remember what it's called but the blood gets backed up for a second or two and then the heart beats faster for a while. You are born with it and it poses no health risks of any kind.

About the beer...here is the link to an article that lists a whole bunch of gluten-free beers

Open Original Shared Link Hope that helps

Wendy

[watkinson]

Sorry wrong link

Open Original Shared Link

Wendy

[watkinson]

okay apparently I can't type

try AGAIN,

Open Original Shared Link

Wendy

[watkinson]

oh well, it's not working...sorry

check on the board for the thread entitled beers! For some reason that one gets you there but now I can't get it again.

[misskris]

Hi!

I noticed that you mentioned you have a lot of respiratory/allergy/cold problems. I used to have this problem as well. I was even hospitalized at one point b/c I kept having reoccuring sinus infections and the dr didn't know what else to do. I was on heavy antibiotics - IV for 6 weeks at home!! And a few months after it was all done - guess what - ANOTHER "sinus infection." So I kept struggling with this my whole life - sick every month. But when I found out about Celiac, I also found out about candida at the same time. I read that candida (yeasts that grow thruout your body) can easily overtake a body that has a compromised immune system (from the antibiotics and Celiac as well - in my case). The Mayo clinic did a study on candida in the respiratory track and found that this is the primary cause of chronic sinusitis. So in addition to going gluten-free, I also went on Candida Cleanse. I took some herby pills 3 times a day and tried to cut out carbs and sugars as much as possible and completely eliminated anything with yeast (which wasn't hard b/c going gluten-free cancels out ALOT of the bad stuff). I also started taking acidophilus, which is a good bacteria that helps you digest your food and eats up all the yeasties.

I don't know if it *was* candida or not, but my respiratory problems are completely gone. I haven't been sick in nearly a year now. Tho I know that going gluten-free and taking vitamins has definitely helped boost my immune system, so this is probably a big part of it.

I DO know that I will never go on antibiotics again unless it is *absolutely necessary* b/c they always just seemed to make things worse. Now if I feel down - like I might be getting sick - I go the herbal route and try to get lots of sleep as well.

Ok - in response to your sleeping problems, I get terrible insomnia for like 2 or 3 days after eating gluten. When I first went gluten-free, I would sleep for like 10-12 hours sometimes (maybe that was my body healing itself?). Once I was gluten-free for awhile tho, I started to feel better and sleeping normal. Taking a multi-vitamin everyday has helped that along. In addition to the multi, I also take folic acid, psyllium husks & glutamine (which helps rebuild muscle and helps repair your tummy).

My hubby and I have not bought new kitchen utensils, but we have gotten rid of our wooden spoons. We do everything gluten-free at home, but occasionally there are slip ups. I don't worry about cross contamination at home tho. My husband thinks it's a little strange that I have to worry about utensils, but he understands. He even beat himself up the other day b/c he we were at my parents house and he stirred the soup with a wooden spoon!

Sorry to write so much! I do hope that some of it helped!

[rmmadden]

To quote a famous line from an old movie...."Judi, Judi, Judi...."

First off welcome to the board. This is really a great place for getting info and in general just keeping your sanity by talking to other celiac disease people.

To answer your questions (as best as I can) I definitely think a correlation exists on how you feel on a day-to-day basis and the damage you have sustained. Especially after you have gone gluten-free. I think there is a "Gluten Withdrawal" one goes thru and I think one developes an increased sensitivity to gluten once your system starts living without it. Personally I went thru the withdrawal which lasted about 2-3 months and now I am very sensitive to Gluten.

The labeling issue with gluten-free foods is more of an issue of your system versus labeling I think. What one person can tolerate another might not. A lot of celiac disease people have multiple allergies so it's hard to nail-down specifics. I have heard stories where products have changed that were once gluten-free but no-longer are. Best advice is to always read and keep a food diary to see what you are reacting to.

Finally, on the beer front......Try Bard's Tail Beer. It's gluten-free as it is based on sorghum and it's not bad. Taste's like a micro-brew in that it is 'Hoppy".

Hope you feel better & Best of Luck!

Cleveland Bob

[JLK]

Thank you all for the suggestions!

Misskris, I had not considered candidia before but it makes sense and I have had a canker sore for over a yr and a half now. I realize cankers are thought to be caused by viruses and candidia is a yeast but why would just one "arm" of my immune response be challenged?! Is there an easy way to determine if one has systemmatic candidia? I have to see my dr in six days so I'll mention it to him as well. BTW, I have to inform my doc that I have determined I am gluten intolerant and suspect I am a celiac. He is great; won't be threatened by a patient telling him their ailments! High time to get him thinking along these lines too.

Wendy, I do have confidence that I will get better but I am so worried that I am getting gluten in my system from somewhere I haven't identified yet. Does the body start healing even in the presence of minimal gluten or can no progress be made until one is absolutely free of it? As for the hematuria, the urologist was gung ho to do the dilation without considering any other possibilities--to be fair, this was before I discovered my gluten sensitivity but he was just too sure of himself and EAGER for my comfort. I'll talk to my family doc about it in a few days. And I do have a heart murmur but it has never been noticeable to me. Again though, it's a good thought since I hadn't connected the possibility of my arhythmic breathing and subsequent anxiety to a heart condition--assumed it was related to my asthma since both problems started after the wildfires (2 yrs ago), but that was also the time when I started the Blood Type Diet, discovered a "problem" with wheat and then went gluten-free. And I'll look for the beer thread, thanks!

ClevelandBob, thanks for the Bard's Tail Beer suggestion, I'll look for it today...crossing fingers! 2-3 months of withdrawal? Do you mean that symptoms just get worse for awhile after going gluten-free? How would I know whether it's withdrawal or whether I simply haven't found all of the gluten sources in my life?! I definitely am much more sensitive to gluten than I was just a few months ago. And I can't tolerate dairy; makes me as or even more sick I follow the Blood Type Diet and therefore don't eat alot of other things as well, like no corn, no potatoes (sweet potatoes are good though), no peanuts, etc. I do eat soy and eggs, which are highly allergenic for some and they seem to be OK.... My husband thinks I should go on a complete elimination diet and then introduce one food item at a time!! Seems I may indeed have to. Thanks for the welcome!

Judi

[fuegita]

Hi Judy and everybody else. My name is Holly and I think this is my first post. (May have made one a couple of years ago when I was first diagnosed). I've enjoyed reading everyone's posts on various familiar (and sometimes scandalous!) funny posts all over this site.

Okay, first of all Judy, it took me over a year on a gluten free diet before my giant swollen hurting stomach felt better. If you can, I would save up your money and get a full panel allergy blood test through a Dr. or a good Naturopath who is affiliated with a good lab. The Naturopath visit and blood test together should cost between $150 - $200. I know it's a lot but it is worth it to just KNOW what's going on sometimes.

I also had a phase where my body would seem to "lose the signal" to breath while I was sleeping. AND I also have bladder inflammation and pain and overactive bladder symptoms. I was just reading on another website that food allergies may cause or contribute to overactive bladder. The site was saying that if tissue is inflamed enough over a period of time the inflammation can travel right into the nerves and inflame the nerves..that and just the swelling of the bladder or small urinary channel can cause the problems. Oy vey. I also have a severe soy allergy and dairy. I am currently saving up money to get a full panel allergy test. I just got the basic, soy, gluten, dairy, eggs one. (After I knew I had gluten enteropathy). Sister, I feel your pain! I never thought my stomach would feel better and it still is very sensitive. But better! The other HUGE piece to all of this (which is another big topic and whole other site!) is that I was very seriously ill for two years and still ill another year later with an EXTREME case of Mercury Poisoning. My levels were off the lab graph. I am 32 years old. I was basically in bed for two years with extreme fatigue and neurological problems (vision, cognition, etc.) big change from my working, artmaking, conceptual arguments until late in the night, life. I thought the breathing problem was part of the fatigue or brain problems from the mercury but maybe it was a food allergy reaction. I am another person who has a million symptoms which would overload this site and be off topic for this site. If you want to ask me more about anything, you can email me directly. I am almost back to normal! I still have a beautiful life. It is just slower, physically and mentally but I've gotten most of my brain power back! Halleluiah! (However that is spelled.) It's really amazing how you can come back from really altered states and just be well again. It's amazing when you've been sick for a long time and you think that's just the new state of being--and then you get well. It does feel like a miracle.

I know of some good herbs that really actually do soothe the bladder if you are interested.

Lastly- I used to sleep HORRIBLY and strangely through all of this but I am much better now and I know I sleep much better if I am taking a good multi-vitamin (liquid is best but I can't find any right now that are both gluten and soy free ) and if I take extra magnesium before bed and fish oil every day. Seems basic but after 3 months without a vitamin or supplements it is clear that they help my sleep. A LOT.

Good luck to you and everyone else!

-holly

[fuegita]

Ooops. I don't know why I have a mad face emoticon by my name. I didn't mean to have that. I am very smiley faced in real life. I am mad faced emoticoned about the lack of gluten AND soy free liquid vitamins, though, that's true.

-h

PS Oh man. I did say I was slow. I figured out how to go back and remove the accidental mad face by my name but not how to eliminate this post. Feeling pretty dorky.

[KaitiUSA]

Ooops.  I don't know why I have a mad face emoticon by my name.  I didn't mean to have that.  I am very smiley faced in real life.  I am mad faced emoticoned about the lack of gluten AND soy free liquid vitamins, though, that's true.

-h

PS Oh man.  I did say I was slow.  I figured out how to go back and remove the accidental mad face by my name but not how to eliminate this post.  Feeling pretty dorky.

<{POST_SNAPBACK}>

Don't worry about it...I knew what you meant and I'm sure people on here did too. Welcome to the board.

[JLK]

Thanks Holly. I thought I was gluten-free, thought I was getting better. Now I realize I've been getting gluten daily from Hornsby's cider--stopped drinking it last week or the week before? Stopped using hair conditioner with wheat germ oil last week. Hunting down other sources; cat treats, one flavor of Nutro dog food (others OK), suspecting everything now. Still using all the teflon pots and pans, but it has been a couple years since any flour was used in them for gravies...so all the gluten would've worn away in the following two years, right? Can't afford a new kitchen!Yes, I should and will start a food diary tomorrow.

I am really scared. It is 4:30, I've been up all night. I think I have had two OK nights this past two weeks. Every time I start drifting off, my mind races awake with anxiety from forgetting to breathe. This doesn't happen during the day so I suspect something I do at night is causing it (but that argument isn't convincing to me). This breathing rhythym problem has been getting worse for over a year now. I used to think it was asthma-related but now I don't know. This two week stretch of insomnia is the worst yet.

Good thing I'm not currently working--laid off mid-June, just in time! It was my first job after being disabled for four yrs and the pace, stress, and overtime decimated my stamina...for lack of a better word, not that I considered myself to have any then let alone now!

I am so discouraged. I thought I was gluten-free for 7-8 months. I was wondering why I wasn't feeling much better and blamed it on the job, but now I'm back at square one. OK, this time will be gluten-free, but folks, for me (and for a lot of you too) it is more than just the gluten. I also get violently sick from casein and have cut dairy out for about two years now--same time I discovered my "allergy" to wheat. Then rye and oats. Now maybe eggs. Still eat soy and should eliminate it just to be sure. In addition to those known food sensitivities, I started following Dr. D'Adamo's Blood Type Diet two years ago. Any of you out there follow the BTD too? So this means I can eat rice! Really though, it means I can no longer trust any food I do not make myself. For ex, all of the lovely gluten-free breads out there have either sunflower or safflower oils, avoids for a blood type O.

Thanks everyone for reading. The typing has calmed me down. Sorry for rambling. 5:10 and still breathing. I'll go lay down again and hope for sleep.

Judi

BTW, Holly, I am very interested in your experiences and will pm you when I can think straight.

[blueshift]

Oh no! Are you guys all telling me that my urinary frequency is likely due to gluten as well? What a drag! That means my appointment for September 1 with my urologist could be a waste?

How long does it take for the symptoms to subside?

[nogluten-]

Hi everyone,

[i started this as a response under the topic Replying to Weird Question, the bloating and frequent urination topic, but after typing so much I thought it best to start a new thread.]

Soooo, I am not alone with this frequent peeing and it certainly could be related to my body's attempt to rid itself of the gluten. I have always been a frequent urinator, so much so that road trips are very uncomfortable and my husband used to get all bent out of shape when I'd have to stop again! He is more understanding now.

OK, short intro here. Always have had the following-

nausea

frequent urination

hypoglycemia

respiratory system allergies

hard time sleeping

guaranteed to catch every cold virus out there (to the point of being sick with a cold for 7+ months a yr)

Without the monetary resources, I really am not sure what to do next other than keep adjusting my diet and hope I understand what my body tells me! I take some supplements, but definitely not the recommended amounts--they can make me nauseous too (although the ones I get from the Blood Type Diet store are much gentler than the high priced health food store ones).

I know this will get easier with time but I feel pretty overwhelmed. I am afraid to eat out anymore at all. Luckily I don't live near family (!); I'd like to figure it ALL out and then share my food requirements with my family--don't want to confuse them with a highly complex diet that changes too!

I do have a few questions if you don't mind reading a bit further...

1)  Is there a correlation between how sh*tty one feels from day to day, not right after being glutened, and the severity of the damage to the villi? I assume so since, conversely, we should feel better as we heal, once that healing has become significant enough to start alleviating symptoms at some threshold of recovery.

2)  Can you trust all packaging that says its contents are gluten-free or do you have to check these out at the time they were made (lot number) with the producer in case they changed practices?

3)  How to fill the hole quitting beer leaves in the beverage repertoire?! Any good gluten-free ciders? What about Hornsby"s by Gallo (I have been drinking it, but not for the past 4 days now, and can't get in touch with the brewery.)

Sorry for being so long winded. Thanks for reading!

Judi

<{POST_SNAPBACK}>

Hello Judi.

I want to encourage you to continue with the gluten free eating. It does get easier over time. I have Sjogren's and Crohn's, but if I am very careful about avoiding gluten, I feel so much better in every way (including the arthritis,asthma, respiratory allergies, bone pain, dry eyes,mouth,frequent urination, etc. ).

Do you like wine or champagne? Most every wine and all champagnes are gluten free.

You mentioned frequent infections. Do you know if you have IgA Deficiency? This can sometimes cause frequent infections. Something that's helped me fight frequent infections is: odorless garlic capsules, drinking 100 % Cranberry Juice twice a day, Liquid B-Complex (available from GNC) and VSL #3 Probiotics. They're a bit expensive, but my doc recommends them for Crohn's and he said they help healing with Celiac as well. A cheaper alternative is Culturelle or Enzymatic Pearls ( I used to take these.) Your gastro doc or internist can order the vitamin tests for you to be sure you aren't low in calcium, D or others. If you become too low in D you can develop secondary hyperparathyroidism, so these are obviously vital to check on. Good luck and hang in there.

[JLK]

Thanks nogluten!, I see my family doc tomorrow and I'll at least find out how much the testing costs. I don't have health ins right now so I am flying blind with the nutritional approach! Calcium and Vit D are of concern since I am intolerant of casein as well. Anyone know of good non-dairy sources of calcium and vit D?

I drink wine diluted 1-1 with water...hits me hard, stuffs me up, probably the sulfites. I put up with it after all, I need a vice or two at least!!

blueshift, I have no idea how long it takes to clear up -- if you have insurance, I'd go to the doc anyway. If not, maybe you could cancel or put it off to give yourself time to determine if it is the gluten making you go frequently. I think most of the money I have spent on docs all my life has been wasted -- current family doc is the exception. A brilliant man who actually listens! At least for a few minutes!

Judi