Could My Living Situation Be Contributing To Still Being Sick?

[sweetlovelyjen]

Hi, I have been gluten free since April and am still getting sick. I have been fine sticking to the gluten free diet and even had my pharmacy check all of my medications, but I do live with a person who does not do gluten free. I try to be really vigilant about cleaning things in the kitchen and take care not to prepare my food in the same area he prepares his - my stuff is even stored in a separate area of the kichen - but I am still having occasional bouts of that same sick deal that was going on before the drs figured out what was wrong. It's just so miserable when this happens.

Could living with a person who is eating gluten items be contributing to this, maybe inadvertently making me sick through cross contamination or something even with how careful I am? I am not sure what else to check out to find the culprit. I have already been tested for other food allergies to see if it could be something else I am still eating and the only other things that came up were soy and shellfish, both of which I was already aware of. I am doing everything my drs advised to cope with my diagnosis, but still having problems!

Thanks for any help you can offer with this!

[debw11066]

Hi,

I am dealing with the same exact issue. I also live in a household where my family is not gluten-free, but we are so careful. I feel like I need to go live in a bubble in order to maintain a gluten-free lifestyle... I have separate cupboards, my own little refrigerator, toaster, microwave, silverware, pots/pans, dishes... I've changed all soaps, lotions, shampoos, laundry detergent, makeup, medications, pet food... I've gone through it all. There is no gluten getting into my body.

I've been so sick for so long, and I'm getting no better since my diagnosis. Just yesterday I went to my gastro, who is as confused as I am as to why I've not had any relief. He wants to send me to the Mayo Clinic, as a matter of fact, to see if there is something more going on than just celiac.

Sorry, not much help, just commiseration

Debbie

[rinne]

Hi.

So much depends on how long you were sick and how much damage was done, it may take time to heal, a year or two or...

Yes, cross-contamination can be an issue and even the tiniest amounts may trigger a reaction, it may be that but it may also be that it just takes time.

Some have problems with dairy initially and it may be helpful to cut that out for a time. Many of us have found that the simplest of diets is most helpful, avoid the highly processed gluten free foods, stick to basics, meat, fish, vegetables and fruit initially and keep a journal to track what you are eating and your reactions.

It is critical to find out where your vitamin levels are at, depending on your health supplements may work for you or not, my system was so challenged in the beginning I couldn't handle pills but the B Vitamin shots were wonderful.

I have been sick going on six years, gluten free for two and a half years and I am now feeling better, In part, I attribute this to the SCD (specific carbohydrate diet) which I started a few weeks ago, for some going gluten free is enough but not for all.

This is a great site, lots of support and information.

[home-based-mom]

Anything touched by someone who has eaten gluten and not washed their hands or face or brushed their teeth is a prime candidate for cross contamination.

Often overlooked areas include things like refridgerator door handles, microwave oven handles, kitchen towels, door knobs, faucet handles, the remote control, computer keyboard and mouse, the car door and steering wheel, etc. etc. etc. ad nauseum.

So basically if a person eats gluten - especially finger food or a sandwich - and then touches anything, they have contaminated whatever they touched. This would include the faucet handle if they actually washed their hands after eating, which people often do not do.

If you have been diligent and are still getting sick, look into this area.

This also applies outside the home, either in the workplace or anywhere you might shop. Think cart handles, escalator rails, atm keypads, anything.

Just because you are not paranoid doesn't mean you are not getting cross-contaminated!

[debw11066]

I talked about cross-contamination issues with my GI yesterday... this is no way to live! Being so sick, and having to be so paranoid about EVERYTHING, not even just at home, is just not an acceptable answer for me. There has to be more going on.

With me, specifically, I have never tested positive on biopsy (which I've had done 5 times) nor bloodwork (countless) for celiac. A naturopath found high anti-giadin levels on stool testing, which is how I ended up where I am today, on a gluten-free diet. I am also, according to this naturopath, intolerant to all dairy, soy and eggs.

At this point, I react to everything I put in my mouth, including water. I am convinced there is more going on with me than being cross-contaminated with traces of gluten left over on doorknobs and steering wheels

Debbie

[rinne]

Hi Debbie.

Five biopsies! Wow.

I am sorry to hear that you are reacting to everything, even water. What are your symptoms? How long have you been sick? Were your digestive problems preceded by years of migraines or arthritis or.... how old are you?

The more you can tell us, the more helpful we can try to be, I can't promise help but believe me I know what it is to be sick. I have been ill nearly six years and I spent two years horizontal in horrible pain, there were days I wanted to die because I was just so worn out. I told my husband that I was thinking about winter camping, as in leave me in a snow bank to freeze to death because I can't do this anymore.

I feel deeply that a great part of my healing has come from this board, from the information I have gathered and the support I have received.

I hope you'll hang around and share your story, or maybe you have?

[ang1e0251]

Are both of you eating gluten-free replacement products like breads and mixes? What about products produced in mixed line facilities? I had no money for any of those when I started the diet and I think that it was the best thing for me. Now that I'm better off, I see that many of those alternate grain products are tough on me. I really feel best when I avoid them altogether. Maybe a very simple whole food diet would be best as you detox and heal. What do you think?

[rinne]

Hi, I have been gluten free since April and am still getting sick....

What kind of symptoms do you have? What are you eating? When you say you are getting sicker, how sick are you?

It would seem to me that you should be seeing some improvements by now if gluten is the only issue but so much depends on how long you were ill and how damaged the villi are. It can take a year or two and for some never but getting sicker.

Trace elements of gluten may affect us and so yes doorknobs and kissing are both important to pay attention to.

[debw11066]

Hi Rinne,

Well, I don't even know where to begin...

I have suffered from migraines my entire life, since I was 10 years old. I'm now nearly 43.

Digestively speaking, I've been sick for 3 years. My main symptom is diarrhea. 3 years ago, what brought me to the GI is what turned out to be 5 stomach ulcers, which took over a year to completely heal. Turned out I had h.pylori. That took some time to heal.

I have since been tested for chrohns, colitis, ulcerative colitis, lymphoma, cancers of all kinds, celiac as I mentioned by biopsy 5 times and numerous blood workups, I've been hospitalized for dehydration and severe weight loss (50 pounds in 2 months), I've had so many endoscopies and colonoscopies that the nurses and staff know me by first name at the GI Endoscopy lab.

I've also been tested by a naturopath, who did a complete stool testing, urine testing and blood sample work up. That's how I ended up on a gluten free/dairy free/soy free diet. At this point, my diet consists of rice, plain chicken, and water. It's been since May that I've been on this diet, and I have had zero relief of my symptoms. Zero.

I saw my gastro yesterday, who is sending me to the Mayo Clinic to see an expert in GI issues.

I need all the help I can get at this point!!!

Debbie

[rinne]

What about your exposure to antibiotics? Have you been on them?

Your diet sounds a lot like mine at a certain point although I was adding green peas to the chicken, rice combo. I didn't feel as bad as I did when I was eating gluten but I still felt horrible on that diet.

You said you have had migraines, me too and what hell they are, I think they are part of the global picture of our health and a definite sign that there is a problem, unfortunately I didn't understand that until I got really ill.

I know now that I have a problem with all grains, I didn't want to believe that, I love rice and for the longest time the pain was so harsh and so consistent I honestly couldn't tell if something was making me feel worse but over time and as I have varied my diet, keeping a journal, I began to see a pattern. (When I say varied I mean all simple unprocessed foods.)

Over time, and it has been two and a half years of gluten free, I began to feel slightly better, I could make a date to do something and probably go if I did nothing else the day before or day after but I still wasn't well. (There is more to this saga that weaves in the tick bite and Lyme disease but I don't want to put you to sleep. Oh and there was the lump in the breast and the cancer scare too!) The last six years have been hard.

Finally a few weeks ago I returned to the SCD which I had half tried a couple of times with some success but I just hadn't stuck with it, I didn't have the self-discipline but I think I was finally just so sick of being sick for so long that I was willing to try and now it is working for me.

I don't know that it would work for you but it is worth investigating if you have done the gluten, dairy, soy thing and are still suffering.

I asked about antibiotics because I have run across some medical studies showing a connection between digestive disorders and exposure to them. I think we have all heard for years now that we should eat yogurt if we take antibiotics because antibiotics kill the good bacteria in our gut. The problem is the antibiotics are a fire storm and yogurt is a garden hose, commercial yogurt is loaded with sugar and not cultured long enough to really develop the probiotics, further according to Elaine Gottschall the commercially prepared yogurts are high in Bifidus which may not be of benefit, in fact the opposite.

My thinking is that it takes time for us to become seriously ill, we take years tipping toward a collapse and when it comes it is very difficult for us to find our way out of it. At the point of collapse our bodies are starved of nutrients and there is no easy way to get them back in, further we are exhausted from pain and have little energy which naturally leads to depression and this compounds the problem. It is hard to get well when you feel like you're dying.

What I am trying to say is that you could change your diet to the perfect diet for you today and still be suffering because now that you are ill there is damage, even if they don't see it (just curious, how many samples did they take when they did the endoscopy? and did you know that they don't see the damage until it is on the third out of four scale on the March test?) and it will take time to heal.

I have found castor oil packs very helpful for the pain, have you ever tried one?

What are your energy levels like?

You could also check out FODMAP, (exploring that is where I read the antibiotic information)

The Mayo Clinic, perhaps they can help but I would not put my faith in an appointment down the road and I would be very wary of tests that require you to consume any kind of solution. I could rant about that but must go.

Each of us is unique, the road to our collapse has been original to us and our way out of it will be too, trust yourself. A few things that have helped me:

1. finding the pillows in my life, occasionally the pillow was Hagen Daas strawberry ice cream. (I have a history of climbing to rocky peaks and throwing myself off them, )

2. eliminating toxins, and that includes setting limits with toxic people

3. renutrifying my body, vitamin B shots, vitamin D....

4. using nutraceticals to deal with the Lyme

5. SCD

6. Rachelville, the community that arose out of the OMG thread of epic proportions

7. the birth of my grand-daughter

8. gratitude for life no matter what

9. lying still and finding that place in me that could rest in the midst of the pain

[pele]

According to Dr. Peter Green in his book Celiac Disease A Hidden Epidemic, the top reasons for continued illness are (besides ingesting gluten) dairy intolerance, overgrowth of bad bacteria in the gut, microscopic colitis, and lack of digestive enzymes due to pancreatic insufficiency.

Sometimes years of eating gluten have caused a lot of damage and simply removing the gluten is not enough.

I also reccommend checking out the Specific Carbohydrate Diet. Going gluten-free didn't heal me, but this diet seems to be working. Here is the website:

breakingtheviciouscycle.info

There is also a big thread here under leaky gut issues.

[Amber M]

According to Dr. Peter Green in his book Celiac Disease A Hidden Epidemic, the top reasons for continued illness are (besides ingesting gluten) dairy intolerance, overgrowth of bad bacteria in the gut, microscopic colitis, and lack of digestive enzymes due to pancreatic insufficiency.

Sometimes years of eating gluten have caused a lot of damage and simply removing the gluten is not enough.

I also reccommend checking out the Specific Carbohydrate Diet. Going gluten-free didn't heal me, but this diet seems to be working. Here is the website:

breakingtheviciouscycle.info

There is also a big thread here under leaky gut issues.

I'm with ya all on everything. I had to start digestive enymes myself and drop all grains except brown rice. I also take acidophlis daily. Gluten free is not enough. I tested negative on celiac and had the gene test indicating (below) gluten sensitivity instead. I also am allergic to soy, lugumes, and clams. I struggle with cross contamination as well. I knew it was that serious after a few partys at my house in which they all brought gluten and it was layed from one end of the counter to the other. I woke up all night naseated with the continued "smell" of the pizza dough. I never realized that just a speck could count, but I guess it's kind of like the first bee sting isn't so bad, but the 3rd will kill you! I had to check my chapstick and lipstick, all vitamins, face creams, toothpaste, etc.

debw,

I wonder if you have a serious bacteria problem and if the digestive tract is just blown out from everything..... I started "OIL PULLING" and it is only 6 days and things are looking up. Check it out on google and the thread started by "ShayFL" on this site. There are several of us doing it, and keeping track of our progress. It pulls all of the bad bacteria out (detox) with out drinking anything. I think it is far better than anitbiotics! It's harmless, and I think you must be desperate, enough to look into it anyway! Good Luck at Mayo

[kbtoyssni]

I talked about cross-contamination issues with my GI yesterday... this is no way to live! Being so sick, and having to be so paranoid about EVERYTHING, not even just at home, is just not an acceptable answer for me. There has to be more going on.

At this point, I react to everything I put in my mouth, including water. I am convinced there is more going on with me than being cross-contaminated with traces of gluten left over on doorknobs and steering wheels

Debbie

Is there a way to make your living situation 100% gluten-free? My home is completely gluten-free, and I think that's why I'm much less stressed out over CC than many of the people here. At home gluten's not an issue, and I've figured out how to deal with everyday situations at work and friends' houses. So it's just the out-of-the ordinary situations where I have to be vigilant. Taking the stress out of my home has been key.

There was a thread a while back about people reacting to water. Some have started drinking only bottled water because they were reacting to something in tap water. Chlorine? Fluoride? Can't remember what off the top, but you could search for the thread.

Maybe you're intolerant to something in addition to gluten? Peanuts for me cause a gluten-like reaction and took a while for me to figure out because naturally I was trying to figure out where the gluten was coming from.

[debw11066]

First, I have to thank you for taking so much time to go through this with me. It really does help knowing I'm not alone in this struggle

I have been through the whole gammit with naturopaths and dieticians, regarding the gut-balance issue. Yes, I've taken antibiotics througout my life (who hasn't?). I've been tested me candida, which thankfully, is one thing I do not have to deal with. I have been taking probiotics of some kind for the past three years, though, in an effort to gain some sort of relief. I've tried many different strains, different brands, both over the counter and prescription. None seem to be making any difference.

As far as my five endoscopies with biopsy- the first few were just pretty routine, and I'm not sure how many samples they took. But the last two, since I was pretty much at the end of my rope at that point, he took 18 samples on one, and 17 samples on the next. None of the samples showed villi damage. I've also had an endoscopic ultrasound done, and biopsies of my large intestine as well to look for microscopic damage there. Nothing.

At this point, I don't know where to turn. I am taking Lomotil to stop the D, which is helping. I will go to Mayo, and am told they will do a camera pill swallow test to look through my entire small intestine. I am still not convinced, and neither is my GI, that I have celiac.

We shall see. Again, thanks for your advice and encouragement. It helps a lot!

Debbie

[Amber M]

First, I have to thank you for taking so much time to go through this with me. It really does help knowing I'm not alone in this struggle

I have been through the whole gammit with naturopaths and dieticians, regarding the gut-balance issue. Yes, I've taken antibiotics througout my life (who hasn't?). I've been tested me candida, which thankfully, is one thing I do not have to deal with. I have been taking probiotics of some kind for the past three years, though, in an effort to gain some sort of relief. I've tried many different strains, different brands, both over the counter and prescription. None seem to be making any difference.

As far as my five endoscopies with biopsy- the first few were just pretty routine, and I'm not sure how many samples they took. But the last two, since I was pretty much at the end of my rope at that point, he took 18 samples on one, and 17 samples on the next. None of the samples showed villi damage. I've also had an endoscopic ultrasound done, and biopsies of my large intestine as well to look for microscopic damage there. Nothing.

At this point, I don't know where to turn. I am taking Lomotil to stop the D, which is helping. I will go to Mayo, and am told they will do a camera pill swallow test to look through my entire small intestine. I am still not convinced, and neither is my GI, that I have celiac.

We shall see. Again, thanks for your advice and encouragement. It helps a lot!

Debbie

Well, you have been the gamit!! Please keep us posted on the Mayo results, and best wishes to you.

I still say check into the "OIL PULLING". Did you say you have been tested for LYMES?

[debmidge]

First, I have to thank you for taking so much time to go through this with me. It really does help knowing I'm not alone in this struggle

I have been through the whole gammit with naturopaths and dieticians, regarding the gut-balance issue. Yes, I've taken antibiotics througout my life (who hasn't?). I've been tested me candida, which thankfully, is one thing I do not have to deal with. I have been taking probiotics of some kind for the past three years, though, in an effort to gain some sort of relief. I've tried many different strains, different brands, both over the counter and prescription. None seem to be making any difference.

As far as my five endoscopies with biopsy- the first few were just pretty routine, and I'm not sure how many samples they took. But the last two, since I was pretty much at the end of my rope at that point, he took 18 samples on one, and 17 samples on the next. None of the samples showed villi damage. I've also had an endoscopic ultrasound done, and biopsies of my large intestine as well to look for microscopic damage there. Nothing.

At this point, I don't know where to turn. I am taking Lomotil to stop the D, which is helping. I will go to Mayo, and am told they will do a camera pill swallow test to look through my entire small intestine. I am still not convinced, and neither is my GI, that I have celiac.

We shall see. Again, thanks for your advice and encouragement. It helps a lot!

Debbie

Deb

I just want to throw this out there as there is a connection......have you had your gallbladder checked out? When bile is dumped into small intestine by gallbladder when it's not needed can cause diarrhea.

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D

[debw11066]

Thanks to everyone who has replied to me with such helpful and insightful responses... and I apologize to the original poster for hijacking this thread! I certainly didn't mean to do so.

I will most certainly mention the gallbladder and lyme disease issues to my doctors. Thanks for the ideas.

I have been taking digestive/pancreatic enzymes for about a year- they don't seem to make much difference.

As far as the water I drink- I only drink reverse osmosis filtered water. Something else to look into I guess.

Again, thank you for all of your help and suggestions. I appreciate all the help I can get!!!

Debbie

[glutenada]

Is the person you're living with your BF? If so, do you kiss him after he eats but before he brushes his teeth?

That's a source of gluten that a lot of folks don't think about. I am fortunate that my husband and son are OK living in a gluten-free house as as the rest of my family members, but when we got out or hubby and son go to Taco Bell or something, I've learned to have him brush those teeth before I'll go anywhere near him.

Same goes with sharing straws or cups of liquid. We used to drink from each other's beverages but no longer. I keep mine to myself and if we're splitting one somewhere, I"ll drink my share first and then pass the remainder on to him.

Little things that you might not think of can be a big source of problems..