At A Loss For Recovery - Guidance Needed

[Syl]

Glutinator Girl,

Thank you for your support and welcome to the forums! I'm sorry to hear you have troubles with yeast and sugar, it is rather unfortunate. The bacon I eat is from Applegate whom has demonstrated themselves as a solid, reputable company, and labels their products gluten free and casein free. This is the only bacon I ever buy as I've continued to use it and haven't noticed any issues with it, but thanks for the suggestion! I really like your statement tho, and I will be sure to do a victory dance each time I eat a meal without allergens, haha. It is really uplifting, and I refuse to dwell on things - thank you so much!

a1956chill,

A great demonstration of power of will and determination, thank you! I'm struggling to keep foods out of the diet for a minimum of 5 days, hehe. I'm starting to fear I do indeed have a Nightshades allergy, but Bell Peppers are my all time favorite so I think my stubborn self doesn't want to even think about cutting them out. I will have to take better initiative as you have. I'm sorry to hear you haven't found the secret to easy livin' as a Celiac, you could make millions off that advice! I very much so like the freezer idea and this Sunday plan to make a hearty Vegetable Soup in large quantity so I may try the freezer/having it on hand thing. It's a shame I've waited this long to try it, really. Thanks again for the advice :]

Mushroom,

Your avatar continues to make me hungry, that it does. Thank you for the tip, I will take you up on that and stay off quinoa for a little bit and add it back in stand alone to test it. I've made quinoa taco's and had no issue, but recently I did so I am not sure if it was the Quinoa or a veggie. Sorghum and Buckwheat are indeed fabulous, tis a shame I led most of my life eating mostly processed junk and fast food, a whole world of delicious is available to us if only our bodies felt like tolerating it, haha. I will stick to things that are both familiar and tolerable for a good period of time, thanks mate!

sreese68,

Thank you for the information! I was schooled on this one when I had my Elisa panel performed to find any allergens that occurred delayed via IGG, but the fructose malabsorption is a new one to me. I already know I have a fat malabsorption issue, but I never thought of fructose too. It's quite possible, and when I see my doctor next week I hope to have testing done to help further dissolve this mystery as nutritional deficiencies are still present. I believe I was told a fecal nitrogen test was the one to request for this, but none the less thank you very much for the suggestion! Onions are something I use in almost every meal just because of the flavor they add, but I will pay very close attention now to see if this may be a problem for me. Best of luck to you on the restricted diet, I feel your pain and my heart is with you!

As a general question that's been mulling around in my head I'd like to throw the idea out there of Coffee. I was advised to cut consumption of caffeine all together while healing, and for the most part I've been able to, but by the time the weekend rolls in I just want to unwind with a simple cup of joe - anyone know if this is detrimental to the healing process? I'm talking about just a single 8 oz cup, no more then a few times a week, and no more then once in a day. I drink Organic instant coffee when I do with Hemp milk, no sugar. I know coffee increases intestinal motility and will usually cause an added bowel movement, perhaps a loss of nutrients, but dang its hard to avoid it all together. It's like denying yourself a treat at the end of a hard day Any information on this would be amazing! Thank you all again, I love the feedback and utilize it greatly!

[mushroom]

Sorry I can't help with the caffeine question as I ditched it 35 years ago However, I still enjoy a decaf cappuccino

[cahill]

I quit drinking coffee in Dec . I wanted to cut it before the elimination diet. I have found that now I can have 1 or 2 cups a week with no problem,,I am not sure I am willing to risk more than that at this point.

[Syl]

You both have my respect for that! I am constantly changing old habits into new ones to try to better myself, but I turned to coffee to fight off the horrific fatigue I felt for the longest time when all along it was Celiacs - we have a bond, coffee bean and I. We dance, we sing, sometimes we write each other poetry. My girlfriend becomes jealous of Coffee bean and I, but we endure.

In all seriousness tho, thanks for the responses! I think you have a great thing going there by just consuming one or two in an entire week, and that is just what I wish for I think I'll make it my weekend tradition on Saturday or Sunday when I need it for the homework boost and nothing more. I'm totally not drinking my farewell cup right now. Newp. *sips* Thanks again for the encouragement! I am planning on migrating to an anti candida diet this week with my loved one and together we shall see if they are a culprit in this mess! I'm sure to find allergens I wasn't aware of along the way too.

Also, I really love the quote of yours Mushroom - "Life is not weathering the storm; it is learning to dance in the rain" I can't believe I read that one in your profile either. Two months after I was diagnosed I found this site and remember reading that quote and to this day use it as inspiration for trying new things. Another thing I really should thank you for

[AmandaM83]

You mentioned High White count in your blood & in your GI tract - did your doctors consider Eosinophilic GI Disease? Those results coupled with your symptoms I would ask your doctors about it - this was something my allergist recently went over this disease with me as a possible cause of some of my ongiong issues (random nauesa, not sleeping through the night, idigestion while on meds). At this point my GI doctor doesn't think that is it for me, but my white count isn't up.

HTH

Amanda

[Ellette]

One thing, there can be gluten in paper products...don't use paper napkins while you are eating, it can be as simple as that if you are an extremely sensitive person and need to be OCD. My best friend's Father-in-law owns a VERY well known vitamins company, her two nephews are allergic to pretty much everything (soy, almonds, rice, dairy...yep, anything you might put on cereal...garlic, they are Celiac, and there are a host of other things they are allergic to). They have done studies because of this so she's the one who told me that I can't get coffee in paper cups. *sigh* Oh, and you might think about getting all your own plates, pans, etc if you haven't already. I started skimming halfway through the second page I'm afraid...my attention span isn't what it used to be (I just got diagnosed on the 18th so the benefits of being off gluten haven't kicked in yet ). A family friend's daughter heads the big gluten free support group here in Oregon (or the Celiac group or whatever it is...a national group with "chapters" everywhere) I guess, and our friend said her daughter didn't notice the full benefit till she got her whole kitchen gluten free so there was no possibility of CC.

[sa1937]

One thing, there can be gluten in paper products...don't use paper napkins while you are eating, it can be as simple as that if you are an extremely sensitive person and need to be OCD. My best friend's Father-in-law owns a VERY well known vitamins company, her two nephews are allergic to pretty much everything (soy, almonds, rice, dairy...yep, anything you might put on cereal...garlic, they are Celiac, and there are a host of other things they are allergic to). They have done studies because of this so she's the one who told me that I can't get coffee in paper cups. *sigh* Oh, and you might think about getting all your own plates, pans, etc if you haven't already. I started skimming halfway through the second page I'm afraid...my attention span isn't what it used to be (I just got diagnosed on the 18th so the benefits of being off gluten haven't kicked in yet ). A family friend's daughter heads the big gluten free support group here in Oregon (or the Celiac group or whatever it is...a national group with "chapters" everywhere) I guess, and our friend said her daughter didn't notice the full benefit till she got her whole kitchen gluten free so there was no possibility of CC.

Personally I've never heard of paper products containing gluten. I use paper napkins and paper towels all the time without issue. I don't normally use either paper cups or paper plates since I prefer using "real" ones. But I wouldn't hestitate using either of them at a picnic, etc.

Would you please back up your statement with a link to a source the rest of us can check out.

[Syl]

You mentioned High White count in your blood & in your GI tract - did your doctors consider Eosinophilic GI Disease? Those results coupled with your symptoms I would ask your doctors about it - this was something my allergist recently went over this disease with me as a possible cause of some of my ongiong issues (random nauesa, not sleeping through the night, idigestion while on meds). At this point my GI doctor doesn't think that is it for me, but my white count isn't up.

HTH

Amanda

Amanda,

Thanks for the heads up. They did eventually mention Eosinophilic Esophagitis and advised me to use flovent for the treatment of it, but that was more towards November. I never took the Flovent (not fond of western medicine) and as of right now the symptoms I had after my endoscopy cleared up for the most part. I'm really sorry to hear you are in a similar situation tho! It sure is perplexing having the WBC constantly low. I've compared records from when I was first diagnosed almost a year ago to complete blood counts done recently and I've been consistently low for a long time.

I feel perhaps it is due to an overactive immune system and Candida overgrowth tho. I am investigating it more this week, but I'm 100% positive I have a systemic overgrowth that needs to be dealt with. I've had thrush on my tongue for as long as I can remember, lately I've had sickening cravings for sugar that only make me feel very spacey and tired, and any fermented or yeast products would send me into outer space. I've done a good deal of reading, books and articles, and basically changing my diet around beating them along with finding something to help clear them out. There is just SO much mixed information out there about it all that I don't know which route to go. After stopping sugar intake for 3 days tho I can say they aren't happy critters

Thanks again for the suggestion tho - I really hope you get to the bottom of your issue. I know how hard it can be when it comes to finding proper diagnosis and treatment, I play my own doctor more then I want to but as a Celiac we have to be vigilant about our health, don't we?

[txplowgirl]

Hi syl. Questions I have are, did you replace your pots and pans, toaster, collander, wooden cutting boards. Do you have household pets. Could your so be cooking her gluten foods in your pans? The reason I ask is because I caught mine cooking his foods in mine.

[Syl]

Ellette,

Thanks for the tip. I don't normally use paper plates or cups whatsoever fortunately, tho I hope paper products don't contain gluten after all! That just opens a whole new world of paranoia for those special occasions when you want a coffee while your out (not that I do that since I always get glutened!)

Txplowgirl,

Thanks for the question! I actually haven't replaced one pot that I use daily. It's a tiny non stick pot, but come to think of it, the non stick part has been rubbing off slowly for months and the aluminum is exposed. My girlfriend used to cook veggie burgers in it sometimes, ones from Morningstar which have gluten. I use this pot every single day for my hot water for tea, for my hot breakfast cereal, etc. Is it really possible it could be causing problems even with diligent washing and dishwashing? I'm super paranoid about cleaning around here, even boil my sponges after my girlfriend cleans something with egg or soy in it. She doesn't bring gluten into the house anymore so I am fortunate there. I've never looked into the cookware thing very much I suppose - we still have a colander that might have been used for wheat pasta a year or so ago.

And I have a little kitty who does eat gluten containing food, but I find it hard to believe that is a problem. Is it impossible to wash gluten off cookware once used or something? I don't recall reading much on this subject, please do inform me :] Seems no matter what I eat right now I feel like crap, I'm open to any change, haha. I've been trying an elimination diet and yesterday made a simple Tinkyada pasta with homemade tomatoe sauce (just onion, garlic and tomatoe) and still felt extremely tired after eating it. I've even tried just organic brown rice by itself and felt stomach upsets. I'm losing mah marbles here

Thanks for the suggestions!

[AmandaM83]

Syl - glad they ruled out EE - to be honest when they mentioned it to me it freaked me out. I finally have found a new General Physican and she thinks some of my issues are from how my body is processing carbs - so I'm looking at a low FODMAP diet.

As for the Non-stick issue mentioned above - nonstick is porus, I just recently discovered I was making myself sick as well! I ended up buying stainless steel replacements - it isn't porus, so I can cook for myself and cook for my husband and feel like it is truly clean in between. I am going to buy 1 new non-stick pan for making hasbrowns though.. can't get them to cook right in stainless.... and my husband just isn't allowed to use it! Cast iron & stoneware (like Pampered Chef stuff) is porus as well and can't ever be cleaned... just in case you have some of that lying around.

[Lori2]

Sometimes it

[Judy3]

I was going to chime in here too but it seems that others have got it covered. Good Luck Syl with your healing. As my chiropractor tells me regularly "Healing takes time..."

[T.H.]

Personally I've never heard of paper products containing gluten....Would you please back up your statement with a link to a source the rest of us can check out.

I do know of one company doing it - with both plastics and paper products - although the name alone would scare us off: wheat ware products.

( Open Original Shared Link )

I've also seen napkins and paper plates advertised with this before, like here:

Open Original Shared Link

Open Original Shared Link

I think we will be seeing it more often, soon, because it's billed as being more 'eco-friendly' since wheat straw paper doesn't involve deforestation.

In canada and Australia, it's also showing up in other paper products that could simply be an issue if we touch and then touch our food without washing hands (magazines and printer paper, for example):

Open Original Shared Link

Open Original Shared Link

And even more fun for us - Ford Fiesta, if I remember the specific car right, is starting to try and go more green. So they are replacing some of their petroleum based plastics inside the car with soy and wheat based plastics. Joy.

Okay, and now the issue of health. :-) Just re: if it's gluten (although yeast sounds really likely, given symptoms you've mentioned).

- The pans can totally get ya. Sharing ANYTHING for cooking with gluten food is asking for trouble, especially if you are really sensitive. Made me SO sick until I stopped sharing pans. You can scrub gluten off of shared equipment, don't get me wrong, but you have to wash it in soap and water, and then scrub every last itty-bitty corner and crevice of it to make sure you got it all off. If there is a crack you can't scour? That's a sign that it's not totally safe. Collanders are famous for this. Anything wood or plastic can absorb it and release it back into your food, especially with heat involved. If you feed the cats dry food and the dust poofs in the air when you pour it? The dust just got in your throat, you swallowed a bit, and gluten just went into your stomach, bleh.

And the sponges? They're can get you, too. The one thing that is important to remember is that gluten, and other proteins you may react to like the eggs, aren't germs. Sterilization techniques like boiling are often completely useless, because they are aimed at killing a living germ, not destroying a protein (sanitizing hand gel, for example, just moves the gluten around on your hand. Doesn't destroy it at all). A good example is the fact that we react to bread in the first place. That stuff is often cooked at 450 degrees F, and it's not destroying the gluten. Boiling is a lower temp. than that - it doesn't do anything to it.

If you have allergies to foods with less stable proteins, like citrus, high heat can denature the protein and make it safe. But the major 8 allergens (like soy, eggs, wheat) are often more of an issue because they are much more stable molecules and so are harder to destroy. You basically get to cook them until they are literally ash before they are destroyed.

Re: your girlfriend. Okay, I'm gonna get a little intimate here, but hey, it's in the interest of safety! :-) Anywhere on your girlfriend that you kiss has to be washed first, and only gluten free products used on it after that. Lips, face, earlobes, skin - anywhere. Lotion products, makeup products, fake tatoos, shampoo, whatever - if your lips touch it, it's gotta be gluten-free.

That includes your own stuff, too. If you bite your nails, no gluteny lotion. If you rinse off your hair and the shampoo ever gets on your lips - gotta be gluten-free. If the cats come rub over your hands - gotta wash them before they touch your lips, if they eat gluten (we're just going through this issue now, sigh. SUCH a pain).

And...can't think of anything that hasn't already been said, so far. Except for me to add, like many others, that I hope you find the answer too. It has taken me over a year to figure out what my issues were, so much sympathy on the frustration of trying to work it all out!

[Kim69]

Not much to add except that you may want to eat white rice instead of brown. Brown rice gives me terrible stomach pain, and I know it bothers a good number of people who malabsorb fructose (though why it does, I have no idea since it doesn't contain fructose!).

I would just like to add that I too am fructose malabsorbent and find brown rice agonizing. It produces a much worse gastric reaction in me than gluten does.

[sa1937]

I do know of one company doing it - with both plastics and paper products - although the name alone would scare us off: wheat ware products.

( Open Original Shared Link )

I've also seen napkins and paper plates advertised with this before, like here:

Open Original Shared Link

Open Original Shared Link

I think we will be seeing it more often, soon, because it's billed as being more 'eco-friendly' since wheat straw paper doesn't involve deforestation.

Thanks for the update...I had never heard of it before. That totally sucks!!! It's bad enough that we need to read labels for foods we buy.

[domesticactivist]

The compostable "plastic" utensils are typically mostly corn, which is a problem for us, so I thought I'd throw that out there, too.

[jackay]

Were you tested for fat malabsorption? After three years of diarrhea and being gluten free for about two of them, I had lots of blood and stool tests, a colonoscopy, endoscopy, CAT scan of pancreas and hydrogen breath tests for fructose malabsorption, lactose intolerance and small intestine bacterial overgrowth. Everything came back negative except for fat malabsorption.

With my fat malabsorption issues, I found that the more fat I consumed the worse I got. I've tried taking betaine hydrochloride and three different digestive enzymes. With two of the digestive enzymes, I had negative results. The other one just didn't help.

Just this past week I started on the prescription digestive enzyme, Creon. It seems to be working. I've been able to increase my fat consumption and not have D. I am actually having normal looking bowel movements for the first time in over three years. My stomach gurgling and gas has cut down quite a bit, too.

The one thing I don't like about Creon is that it contains artificial coloring. What prescription doesn't? I may end up opening the capsules and sprinkling it on

applesauce since I'm guessing the coloring is only in the capsules. I haven't done that yet just because it seems to be working the way I consume it. I just hate the idea of putting artificial coloring in my system. It isn't good for anyone.

My GI doctor told me I would notice the Creon works right away. I didn't believe him since over the counter digestive enzymes didn't work for me. This may be the first thing I feel he is right about. He told me probiotics don't help anyone. Guess they are something he can't make any money on. He probably has an in with pharmeceutical companies.

Don't like my GI doctor but am thankful he prescribed this medication.

[ErinP]

I finally have found a new General Physican and she thinks some of my issues are from how my body is processing carbs - so I'm looking at a low FODMAP diet.

She's probably right.

At the very least, celiacs should be avoiding most sugars.

In Breaking the Vicious Cycle (the book about the Specific Carb Diet which has kind of been the gold standard for diets for intestinal disorders since sometime in the 80s) Elaine Gottshall says:

Some investigators have always maintained that an inability to digest disaccharides (lactose, succrose (table sugar) and maltose) induces the sensitivity to gluten. But even were the disaccharides not the underlying cause of the gluten intolerance, these double sugars should not be included in the diet of celiacs. The flattened intestinal absorptive cells have lost their ability to perform the last step in the digestion which is to split the disaccharides. Many researchers have confirmed the fact that that in celiac patients, ability to digest disaccharides, especially lactose, is severely limited. To include disaccharides and certain starches in the diet of those exhibiting a flattened intestinal surface is to demand the impossible of these digestive and absorptive cells and to add to the existing problems.

Of course, in the book, these statements have 7 references to accompany them.

More importantly, anyone who remembers basic biochemistry, knows that complex sugars are broken down in the duodenum of the small intestine. Which is already screwed up in celiacs anyway.

Personally, I've found that gluten isn't really my problem...Almost all sugars and starches are. I find that when I'm low-carb enough to be in ketosis, I'm completely asymptomatic.

[Korwyn]

If you have a Candida issue, ANY sugar or starch (aka sugar) will feed it. Since your Dr. refused to get you tested for deficiencies, especially given your symptoms, IMO you need to start looking for a new Dr. ASAP, possibly an MD/ND who specialize in nutrition.

Second, I normally tell people that I'm cautious of certain supplements without having some blood workup (due to potential toxicity). But if it were me I would start on a D3 and sub-lingual B12. I have a friend who nearly died a couple months ago (just a few days away from dying) of B12 deficiency because of a math error in the way some of the tests calculate B vitamins. They (normally) don't actually test all the individual levels. They test aggregate B levels for four of the B vitamins, then divide by 4 and take an average. The problem is that his B12 was 0. So the average was off. But the lab system computer kept reading it as normal.

My breakfast usually consists of the following: 1/2 Bananna, bunch of spinich, a leaf of kale, a handful of parsley (very high in K), 3 Tbps or so of unrefined, cold pressed, organic coconut, a tablespoon of lemon fish oil, organic unsweetened coconut milk, and a handful of blueberries or sometimes strawberries, and sometimes a tablespoon of sorghum or molasses (high in iron). Throw them into a good blender and blend to the consistency of a thick shake.

A number of critical vitamins (K, A, E, D) are only fat soluble. If you are not taking in adequate oils with them you are not going to absorb them regardless of how much you take. I'm on prescription from my Dr. of 8,000 units of D3 per day.

Lunch and dinner are usually meat/fish/poultry (preferably organic). If it is non-organic I trim the fat off, otherwise I leave it on. (Yes, I know that fish and poultry are meat, but you'd be amazed how many people I had respond, 'No fish or chicken?' when I say I mostly eat meat for lunch or dinner.

I also have had to go to an almost completely grain free diet.

[domesticactivist]

Re cast iron, we striped ours in a self clean oven cycle, then reasoned it. We got rid of the stoneware.

I think fodmap sounds like a good idea. We also had to do more than just be gluten-free to get better. We do the GAPS diet which is based On the SCD mentioned above.

[Syl]

Thank you all for your wonderful, detailed responses. Fortunately I've been so busy with my girlfriends graduation and her family coming here that I didn't have a single second to focus on my health :] Its refreshing really.

T.H.,

Much thanks for your response! I have recently segregated our cooking equipment and even a separate sponge, something in which was long overdue. She no longer brings gluten into the house, but she does consume many other allergens of mine so I have identified that I need to treat them the same. Thank you for all the tips, I will investigate all of my soaps, shampoos, and so on more thoroughly!

Jackay,

You sure have been through a lot! Thank you for sharing your experience. I was not tested for fat malabsorption, but I too found that when I attempted a high fat diet I was having more trouble them ever. Evidence did indeed point to this being a problem so I've cut back my fat intake and really haven't been able to address the underlying issue other then with diet. My doctor really didn't offer me any help on how to address much of anything so its down to what I learn from my peers and on my own. I have considered adding Betaine HCL to try to get stomach acid production up to normal levels again despite my doctor advising against it as he doesn't have the capability to test my acid levels anyway. I'll have to look up Creon tho, interesting. I've used a few different enzymes before, currently Maxi-Zyme from Country life, and none have been too effective thus far. I have found a difference when using one and not using one so they are indeed helpful! I wouldn't listen to probiotics being useless either as they are probably the single most important thing for restoring our healthy flora. Thank you again for your help!

ErinP,

Very interesting read about sugar, thank you! I've experienced first hand the negative effects of sugar on my body these days and have taken it out of my diet. It is extremely difficult at first, but I found the cravings to subside little by little, and stevia helps a lot ;] The only thing I don't like about fighting off Candida in particular is having to give up fruit all together for now - I loves my fruit! Thanks for the info.

Korwyn,

Thank you for sharing your knowledge! I do indeed have a Candida issue and have been avoiding all sugars and starches for a few weeks now. Along with drinking Pau'da Arco tea I've seen a change for the good and a lot less thrush on my tongue. I believe I am slowly beating them, but I'm not sure if this tea alone will defeat the yeasty beasties. I know its unpleasant to read, but my stool has changed from its usual soft, liquidy form to actual formed stool after all this time. I believe I am finally on to a road to recovery with the candida diet ;]

I did in fact get him to test my vitamin levels during my last visit, but I'm well aware that I need a new doctor. Fortunately I will be moving back to Portland at the end of summer and will be able to see the doctor who originally diagnosed me with Celiac's again so I will be in good hands! We checked up on Vitamins A, E, D, Ferratin, Folate, and B12 I believe. Each one was at a normal range so I don't seem to be deficient in anything we've found yet. I believe the majority of my remaining symptoms are stemming from Candida overgrowth as it has gotten to the point where I'm now avoiding commonly eaten foods like Carrots, onions, and anything else I'd eaten a lot of as I've developed an allergy to them. I feel once I lay down the law on the Candida I will see food intolerances slowly lift and a leaky gut finally repaired.

Thank you once more to everyone who continues to contribute - I take all of your feedback to heart! I learn best from my fellow Celiacs and through the experiences shared by others so I thank you for your time.