Flor

Ms. Curious! Okay I totally GET IT NOW! Thank you SO much, that last round of explanation did it. I really really appreciate your taking the time to walk me through it.

I had also read about the other gene (06) potentially providing some protection against auto-immunity (thank you wikipedia!) so that's a really interesting theory that it might delay onset of celiac. That sure fits with my history.

In terms of our heritage, I know for sure we are a lot of Scotch-Irish and English and German going back a long long way. Maybe a bit of French in there. There are some other strands from my dad's side I don't know as well, but that's most of it. And my husband, for what it's worth, is very much the same. Which may explain why my son and I have same two alleles. I assume the 0201 comes from me and that the 06 is one that my husband and I both have in common.

We don't have a big family history of asthma or eczema or allergies. But I do have some seasonal allergies (and they sometimes seem to be more gut symptoms than your classic sneezy respiratory stuff but I have had both). One of my nieces was diagnosed with asthma as a teen but it wasn't really asthma and inhalers didn't really work. We all wonder now if that was gluten-related (she has the 0201 plus 0202).

My son just in this spring season has started saying he can't get a full breath and at various times seems to be doing a lot of sighing and big breaths. It's just in the last week and I'm at a loss about what to do. I sort of hate to take him to the doc and get an asthma diagnosis. So I am watching it for now because we are just now getting the gluten out of his diet. Do you think the allergy/asthma stuff is really a different face of celiac disease?

I would be delighted to email with you off-list about any of these issues. I am a research nerd and am interested in going as deep into this as I can. I am doing a mid-life career change to get a masters in counseling to be a licensed therapist and part of what really interests me is how much what presents as "mood" disorders like anxiety and depression often has unrecognized underlying physiological causes. The mood issues I've had to deal with turned out to be very gluten and diet related.

I am also in the last six months -- now that my gut is more healed -- dealing with a pretty advanced stage of adrenal exhaustion. Very low cortisol levels, total fatigue, messed-up circadian rhythm, muscle pain (different from the joint inflammation I had before going gluten free), orthostatic hypotension and etc. From my very cursory reading I gather that having untreated auto-immune disease for years can wear out the adrenals so there's a correlation between my celiac disease and my adrenal malfunction. Perhaps also a thyroid relationship too -- I don't know how much research has been done on what portion of the celiac population also has adrenal or thyroid problems. I bet it's high though.

To other contributors on this thread, I want to say thank you for this conversation. And to say a couple of things about how I see the genetic testing. I think it's fascinating by the way that there seems to be widely varying opinions about the relevance of the gene testing. There are folks who seem to say it's irrelevant and others who see it as important. As I read more, i find myself leaning in the latter direction and it's entirely because of my son.

In my case, I was already hugely symptomatic by the time I was diagnosed and went gluten-free. My son has two huge risk factors for developing celiac disease: that I have it as his mom and that he has one of the genes most correlated with getting it. Eating a lot of gluten is one of the factors that increases the change of his getting celiac disease. If I didn't know whether he had the gene or not and I operated as if he were a "regular kid" he would consume a lot of gluten between now and adulthood. And along the way life brings other insults that increase the chances of celiac getting triggered in him -- intestinal infections, life stress, environmental toxins, etc.

One of the key issues for me is that having celiac disease at whatever level and continuing to eat gluten raises one's chance of getting colon cancer and lymphoma by many many times. And it seems to me we don't know the science well enough to know when someone with a predisposition for having celiac disease is actually manifesting low-level inflammation in response to gluten. How many years of that reaction before it shows up as clinical signs?

So when I look at my son who is seven and has a lifetime ahead of him and I KNOW he has this genetic vulnerability to getting celiac, that means for me let's get him off gluten now because gluten for his body is a potential stressor, a toxin really. But if he had my other niece's genes, for example, she's got one gluten sensitive gene and the more rare gene that's the 04 non-gluten-sensitive gene, then I would feel like feeding my son gluten wouldn't necessarily be raising his lifetime risk for cancer. But knowing what I do know about his genes, I feel like feeding him gluten is to raise his risk of getting cancer and that seems worth knowing. Anyway, for what it's worth, this is how I've come to hold is. It's how my doctor sees it as well. But isn't it interesting how many different views there are on this, among doctors and the rest of us? That's why I'm so grateful for this discussion here, to hear the whole range of wisdom and perspectives.

A quick note about my nieces on this topic -- they are both early twenties and both having a lot of new gut and fatigue symptoms. So they both got tested for the gene and for cortisol saliva levels to see about adrenal function. The really interesting thing (to me) is that one has celiac genes and normal cortisol and the other has very low cortisol and no celiac genes. What this means to me, and to them, is that the package of symptoms can look very similar but the road to healing very different. For the celiac gene niece, stopping gluten may be all it takes for her to feel better. For the non-celiac gene niece who has exhausted adrenals, for her the road is more rest and medications and though she is gluten free now, as of yesterday when she got the results, she now imagines a future where she might eat gluten and not worry about it. That's not something her sister will ever be able to do now. So to me, that's a snapshot of why the genetic test is significant.

Oh my goodness MsCurious this is all fantastically helpful and you are so deep into it I can barely follow you! I will go read that wikipedia stuff. I really am interested in understanding it.

In both your quoted excerpts here I don't understand what this means: "This isoform is partially encoded by the DQB1*02 genes in HLA-DQ2 positive individuals." I don't know what partially encoded means and I don't get how to read the DQB1*02 string.

Is this saying 1. that people with the 0201 in their beta strand (which my son and I have) will usually also have the 0501 in the alpha strand (and this is info that Enterolab doesn't provide because they only give the beta strand info)? and that 2. therefore people with the 0201 isoform have "the single highest genetic risk" for getting celiac disease?

Thank you thank you for hanging in there with me on this!

I hadn't read anywhere the data about DQ2 homozygotes having lifelong risk of 20-40% for getting celiac so that's really interesting. My son and I are DQ2 homozygotes? That means we have one version (isoform?) of the DQ2 (ie, 0201) allele but not two copies of it?

If I'm understanding that right then it seems like someone like my son who is related to me who DOES have celiac disease and he has the 0201 isoform that that would put him at two higher-risk groups among those who have some kind of genetic predisposition for celiac disease. Does that make sense?

CassP and Zimmer, thank you for writing!

CassP, I THINK I get what you're saying and the thing about only testing half of each allele sounds like what i read elsewhere, though I don't really understand why or what that's about. And if they give numbers like 0201 and 0202 (those are my niece's results), then what's the missing information?

I just re-read my nieces results (0201 and 0202) and their analysis of her situation is actually worse than mine (0201 and 0603) because they say having both alleles be subtype 2, even though 0202 is not BY ITSELF associated with celiac disease, makes her predisposition to celiac disease higher and her symptoms more likely to be worse.

And obviously having two copies of 0201 would be still worse because then both alleles are celiac associated. At any rate, the combination of these alleles seems significant as well, which then makes me wonder what it means to only report on half the allele. I'm still confused about that.

Zimmer, I like your intuitive approach to all this. It sounds like you've found a way to hold this for your family that works for you. That's exactly what I'm looking for in my own way. Given that we understand that the science is still unfolding and that there's a lot we don't understand about long-term effects of low-grade inflammation on the body, my inclination is to err on the side of safe. There are so many insults out there already -- viral, environmental, emotional stressors -- that we now know can all increase chances of a wide range of chronic diseases. So it seems where we can that reducing the potential insults to the body starting at an early age is a good way to go.

Just one small side example: our son got strep throat a couple of years ago and the scarlet fever rash that sometimes comes with it. I gather if a kid gets the scarlet fever rash, that's some indication that they are vulnerable to auto-immune disorders (like kids who have bad eczema for example). He further developed some signs of PANDAs after the strep (these are auto-immune linked neurological symptoms following strep that usually self-resolve and his did). Now none of this has directly to do with celiac disease, but it starts to paint a picture of a kid who might be prone to auto-immune responses over his lifetime. He also had severe reactions to a couple of vaccines, to the point that we didn't do followup boosters (I mean, even the CDC would have agreed with us on this and his doctor recommended we stop all vaccines until he's 11 and his immune system is more mature). These kinds of "extraneous" details make up a picture to me but it's one that mainstream medicine doesn't yet recognize I don't think.

Anyway, just thinking out loud again...

Thanks so much!

Do you know which DQ2 genes are more strongly associated with celiac or where I might read more about that? I hadn't heard about that.

The whole question of gauging when one is symptomatic is a bit mysterious to me. So here are two examples:

1. My son, seems like maybe his BMs get softer after lots of bread eating. Could be candida or unrelated or a potential symptom? He also seems to be developing some mild pre-asthma type symptoms. I know several people diagnosed celiac in their twenties who were diagnosed with exercise-induced asthma in their teens and they now regard their respiratory symptoms as gluten-related. So are my son's respiratory symptoms potential celiac symptoms? He also gets tired a bit more than you'd think for a healthy young seven year old but his immune system is otherwise strong and any doctor who looks at him would say "this is a healthy kid."

2. My niece, who also has the gene, is 22 and for the last year has been having headaches, nausea, fatigue and depression/anxiety. Would we consider these celiac symptoms? This seems so tricky to me because a ton of what in hindsight looks like early celiac symptoms are things that people go for years without seeing a doctor for.

My situation wasn't that confusing because I was 40 and very sick and completely disabled by my guts by the time I was diagnosed. But my guess is I would never have gotten to that point if I hadn't been eating bread like a fiend for 40 years before that. You know?

I guess part of me wonders if in ten or fifteen or twenty years we'll look back on the 1% of the 33% with the gene having celiac disease and realize that number is totally wrong based on a more subtle understanding of inflammation in the body and the long-term effects of that inflammation and stress.

Thank you for your responses. It's so helpful to have smart people to talk to who have been down this road!

Our tests were done through Enterolab and I gather for some reason they only report one line of alleles or something? I confess I still don't understand this genetic stuff! I've read the basic stuff online and I remember 9th grade biology but this isn't sticking for some reason.

Anyway, our Enterolab results, my son's and mine, were identical:

HLA-DQB1, Allele 1 0201

HLA-DQB1, Allele 2 0603

Serologic equivalent: HLA-DQ 2, 1 (subtype 2,6)

I gather that "0201" is the celiac allele and the "0603" is the gluten sensitive one.

I don't understand, if we each contribute two alleles, why Enterolab only reports two out of four. How do they choose to leave off half the information? Do Allele 1 and 2 represent contributions from mother and father or not necessarily? I sent them an email to ask this question -- I don't understand if the fact that our results are identical means that my husband and I have at least one of the same alleles or if it doesn't mean that at all.

As to the second issue of blood testing before going gluten free...I guess the puzzle I'm having with that is this: it seems like the boundaries of what is considered "having celiac" versus not "having celiac" may be shifting down the line. New research indicates people can have celiac and be at higher risk for cancers long-term even if they show no villi damage. And if the false negatives in the blood test are possible and are higher for kids, then a negative blood test doesn't really seem to say much. If a positive blood test would lead us for sure to go gluten free, then wouldn't a negative one still likely lead us to go gluten free?

I may be lost in this but my thinking is that if celiac disease is widely underdiagnosed, that it takes years on average to diagnosis, and that 99% of the people who ARE diagnosed have the gene, then wouldn't we be risking long-term inflammation and damage by continuing to feed our son gluten even if he isn't actively symptomatic? So many of the symptoms it seems to me in retrospect are vague and low-grade for years. I mean, is feeding gluten to a child who has the gene so different from say smoking -- ie, taking in a substance that over the long-term has the potential to cause real harm? I'm not arguing FOR this position; I'm more struggling with how to hold this given that we know how underdiagnosed celiac disease is and how much higher the risk for cancer for those who have it and keep eating gluten.

Thank you for the conversation here!

Hi all,

I have celiac disease and have one celiac gene and one gluten sensitive gene (or allele I guess to use the better term).

So I had my son tested (he's seven) and his results are identical to mine, right down to the specific string of numbers for both alleles.

I have two questions:

1. Would you immediately get your son off gluten AS IF he had celiac disease because even if we don't see symptoms we can assume gluten over the long term will lead to inflammation? Does anyone address this issue in the literature or research?

2. Would you interpret these results to mean that my husband and I have one or both of these alleles in common? Since I only contribute one allele, then one of these two that my son has had to come from his dad even if it's the same as mine, right? Partly, I'm trying to figure if my husband needs to be tested too in the potential situation that I contributed the gluten sensitive gene and HE contributed the celiac gene to our son. I don't really understand how this stuff works and I read someone on here mention that Enterolab doesn't give the whole result, that there would be FOUR alleles to report. So is it possible the results they've given us are only the alleles I'VE contributed and we actually each contribute two and not one?

Thanks for any insight you all might have!

The lab recommended by one of the docs who "wrote the book" on adrenal fatigue and that also accepts direct orders by patients is ZRT lab:

Open Original Shared Link

The MD is Dr. Wilson and his book is:

http://www.(Company Name Removed - They Spammed This Forum and are Banned)/Adrenal-Fatigue-Century-Stress-Syndrome/dp/1890572152/ref=sr_1_1?ie=UTF8&qid=1296166228&sr=8-1

It's a quick read and is useful for having a many-page questionnaire in it that almost makes doing the cortisol test unnecessary. My results from the survey correlate so closely with the lab results.

I've also found Dr. Lam's information to be helpful but you have to work around the ads:

Open Original Shared Link

The Mothering Mag thread is here:

Open Original Shared Link

The compounding pharmacy my doc works with is:

Open Original Shared Link

They make customized topical creams for things like hydrocortisone and bioidentical progesterone, but also for Vit D and B vitamins, to bypass the gut.

I assume there's discussion elsewhere on this forum about the GAPS diet, but here's the main website:

Open Original Shared Link

And there's a yahoo list for followers of the diet (a ton of traffic so I stopped following but also a ton of information) here:

Open Original Shared Link

Whoooops so sorry, my brain not working.

Labrix did the saliva test. There are three or four main labs now that do this saliva cortisol testing (it's four samples throughout one day), some of which require a doctor's order and some of which you can do directly with them. It costs about $140. I think even Medicare pays for it. You can also ask them to add estrogen/progesterone/DHEA (all of which the adrenals are responsible for, at least in part) to the test, though if you're still cycling you need to do that at the right time of the month (I think days 19-22).

I dug up all the labs I found for my cousin and can go find that email to her and will post back here. I think you can even order them through Amazon.

Anyway, duh, Enterolab did my celiac gene test (cheek swab) and I crossed them in my brain.

F

Sorry, correction, that's Tyrosine I take, not taurine, though I think taurine shows up in some other supplements I take. But Tyrosine is specifically recommended for adrenal fatigue.

I had the saliva test done through Enterolab and my cortisol levels barely get up off the floor in the morning and then crash the rest of the day. And my symptoms indicate I'm estrogen dominant. So I am taking hydrocortisone in very small doses and bioidentical progesterone half the month, both topically so as to not go through the gut.

Were the hormones you were given bioidentical or was it pharma pretend estrogen? I also got an ovarian cyst when I took estrogen make by pharma companies -- it's not the same estrogen as in your body, not the same molecule, but you probably already know that.

My doc is an internist but an osteopathic one, a medical license but not an MD. She works only with women and is also a gyno.

I haven't done the food allergy testing -- who did that for you? What is the test called? I know my niece had it done but I can't remember how. I gather that it turns up a lot of false positives though. She's gone on to eat many of the foods that showed up in her test. So I don't totally understand how much or how long one uses them for guidance.

I had hair analysis done too -- I want to do some research on how well or not well-regarded hair analysis is as a sampling method. In my case, the interesting thing is that they didn't know my other labwork or any diagnosis and the one thing they came up with most clearly was that my low sodium and potassium indicated adrenal exhaustion, so it seemed confirming in that way.

I will be back with some links I've found useful later.

I have serious orthostatic hypotension -- my blood pressure drops a lot from sitting to standing -- which surprised me and is another indicator of adrenal fatigue.

Lots of people I gather are treated for adrenal fatigue without hydrocortisone, using just supplements and adrenal cortex (bovine sources) -- I'm still trying to understand the science of how eating ground up cow adrenal glands helps a person's adrenal glands.

Other than the GAPS diet and the supplements I was already taking to heal my gut, the changes I've made are to go to sleep earlier and stay in bed until at least 9am. I am getting more sleep. I lie down later afternoon every day. I take Taurine and Ashwaganda in the morning (there are other herbs recommended as well but I haven't gone there yet). I had lost my appetite, which is common in adrenal fatigue, so while I was eating mostly meat and vegetables, I still wasn't getting enough protein. Too many nuts which don't have enough protein if you aren't taking in a lot of calories. So I am eating meat with every meal. This isn't permanent but my body wasn't getting and/or assimilating enough protein. I"m taking digestive enzymes with every meal now. And I am taking much larger doses of Vit C and Magnesium than I was before.

And I've started doing Qigong and going to acupuncture, both of which I think are helping energetically, though the acupuncture leaves me feeling WIPED for a day afterwards.

There's a pretty informative thread on the Mothering Magazine boards called THE adrenal fatigue thread -- it got so long they had to split it. But it's not as active as the celiac forum and they aren't addressing the specific relationship between gut health and this other stuff. Though interesting to read all these other women with crashing cortisol.

Thanks!

Hi all,

I would love to hear from others who have adrenal fatigue/exhaustion. Who else has done saliva cortisol testing and/or from symptoms lists thinks this is part of their issue? And has anyone done research on the possible links between Celiac and adrenal fatigue and/or links in terms of recovery?

I am going to do some research and will post back here. There's some great books and online articles now about adrenal fatigue and I have a sneaking suspicion that the burden on the whole body of eating gluten while undiagnosed with celiac for years may contribute to adrenal exhaustion so that there may be folks out there for whom going gluten-free doesn't do it because the adrenals are worn out.

I have been gluten-free for four years and now eat paleo/GAPS diet -- ie, no grains at all. I had to get off grains entirely (and corn and potatoes) for the gut issues to resolve. My guts are mostly healed and the joint pain much better, but it was followed by increasing exhaustion and muscle pain and a host of other symptoms that at first I misdiagnosed as CFS/FM.

But when I did day-long saliva cortisol test, turns out I'm in stage three adrenal exhaustion but don't otherwise have any inflammatory process going on (based on extensive blood tests). The adrenal exhaustion requires other treatments and lifestyle changes beyond what the gut healing required.

I searched for "adrenal fatigue" on this forum and found a number of mentions in different threads but wondered if it might be helpful to have one place where we share information about this specific inter-connection?

Totally fine if it's not helpful. But I'll put it out there and come back with some links and see if there's a need for this thread.

Thanks!

F

Hi everyone. Thank goodness some of you seem to really understand this gene stuff. I am barely grasping.

My Enterolab results came in today and I have

HLA-DQB1 Molecular analysis, Allele 1 0201

HLA-DQB1 Molecular analysis, Allele 2 0603

Serologic equivalent: HLA-DQ 2,1 (Subtype 2,6)

I understand this as having the DQ2 celiac gene and the DQ6 gluten sensitivity gene. Yes?

Is there anywhere that these various gene combinations are talked about in terms of symptoms, outcomes or just explained with respect to the disease process?

I've picked up little snippets, like DQ6 is evidently also protective AGAINST some auto-immune diseases. So is it "helpful" in any way to have the DQ6 if you're going to have the DQ2?

Anyway, I'm interested in this stuff, I've read the wikipedia entries, but I'd love to know if there are sources where this gets explained more thoroughly with respect to celiac disease.

Also, I'm going to get my six year-old son tested because presumably he has either the DQ2 or DQ6 from me and something from his dad. This is what you all would do right? And then it would be helpful to have some kind of guidance about whether I need to get him off gluten right away or whether we don't need to panic about that. I'm just trying to figure out how to hold all this.

I'd love to hear reactions from anyone about how you would respond if say your child had two gluten sensitivity genes (which seems most likely for people of European descent) but no celiac genes? And if your child did have the DQ2, would you get him off gluten ASAP and proceed AS IF he had active celiac disease?

It's very clear based on the trajectory of my symptoms and my reaction to going gluten free that I have celiac disease even though I haven't done the biopsy. I had the full line-up of risk factors that are associated with turning those genes "on" leading up to becoming chronically symptomatic.

I don't understand the B and A allele thing. Enterolab evidently only tests the B line? Is this leaving out key information that would be helpful?

Thanks!

Hi all,

I haven't been here for a long time. But the canker sores post came up in my google search and now I'm back.

From what I've read, canker sores are also a symptom seen in adrenal fatigue. Which raises the question for me here about who knows anything about the relationship between adrenal fatigue, celiac, and CFS/FM?

I'm being tested for adrenal fatigue (saliva test, cortisol and other hormone levels throughout a day) among other things. My diagnosis for celiac is indeterminate b/c I was off gluten when I first went to the docs and was unwilling to go back to eating gluten for their tests. I am getting tested for the gene though.

It seems to me ALL these ailments, even celiac, are very stress-related, which is to say mediated through the HPA axis (hypothalamus, pituitary, adrenal axis) which is why I think many of the symptoms are similar: sore joints and muscles, fatigue, leaky gut, malabsorption, depression/anxiety, skin inflammation, multiple food sensitivities, etc.

While I've been gluten free for five years, the most dramatic round of gut healing I've experienced (near total elimination of all gut symptoms) happened when I stopped eating ALL grains, including rice, corn, and potatoes. I eat a modified paleo or GAPS diet now.

I think for people with celiac (or many people with celiac) the gluten reaction is only part of the story. So while my guts have largely healed, I now have a lot of symptoms of adrenal fatigue. I think it's part of the same process.

My guess is in time we will discover that so many of us who have or think we have celiac disease, that stopping eating gluten is only a small part of what needs to happen. And that another part has to do with supporting the adrenal glands and changing our lives so that we do not absorb and process stress in the old way.

I haven't kept up on the literature, but I'd be curious to know what portion of people diagnosed with celiac disease make a full recovery just by eliminating gluten from their diet. Anyone know?

Dear friends,

I spent a lot of time on these boards for a couple of years and got some very helpful information along the way.

I wanted to offer back a quick report since I seem to have largely recovered from the leaky gut I had -- in case any of this is helpful.

I developed chronic and severe gut problems (followed by joint and mental health problems) after two rounds of intestinal viruses and post-partum exhaustion. I thought at first it was celiac but going gluten free only helped a little. Stopping soy, corn, dairy, nightshades, yeasty foods, high oxalate foods, etc etc only helped a little more. Taking buckets of supplements helped a little more. But the joint pain got worse and there were still way too many bad days even eating very strictly.

I recently learned from a rheumatologist that some people develop long-term post-viral syndromes after gut viruses and that five years is a fairly common long-term recovery time. I am just short of five years now.

After all my experimenting around my road to recovery looked like this:

1. Avoiding all foods that potentially cause inflammation. This would include: caffeine (green tea okay, also oolong), artificial sweeteners and thickeners (carageenen), corn, potatoes (and eggplant and tomatoes), wheat, pork and beef, soy, dairy and high residue foods like nuts and berries and raw vegetables, alcohol, citrus, sugar, garlic, onions. This is still the diet I mostly stick to though there's now room for some violations for me. It's basically chicken and fish and cooked veggies and rice and quinoa and avocado and coconut.

2. Supplements to support gut healing. Top of my list would be: glutamine, acetylcysteine, arginine, anti-oxidants (D, E, C. CoQ10), and some anti-inflammatories like tumeric, along with other generally supportive supplements (Bs, cal/mag, multi, niacin, etc). I can walk through what each of these is for and dosages for those interested. Of these N-acetylcysteine (NAC) has by far made the biggest immediate difference -- almost entirely eliminating my joint pain (I tried going off and coming back on the NAC and the joint pain correlates exactly).

3. Probiotics. Three times a day. I tried many very expensive probiotics with no consistent effect (VSL3, Threelac, Culturelle, etc). But the most recent probiotic I've been taking has made a HUGE difference. It's Dr. Ohira's Probiotic12. You can buy it online. It has changed the ecology of my gut in a way that nothing else has. Really nothing short of miraculous. My digestion is happier than it's ever been at any prior time in my life, going all the way back to childhood.

Side note: lots of people recommend digestive enzymes to help people with gut problems get all the food digested. In my case, it led directly to acid reflux. I have enough stomach acid and that wasn't my problem. Also, a lot of people recommend herbal anti-fungals (grapefruit seed extract, garlic, black walnut, olive leaf extract, etc). I would NOT recommend any of those, especially at the beginning. They are a kind of chemotherapy really and are hard on the body. In retrospect I think they did more damage than good for me. I think the above stuff to support gut ecology will go a long way to dealing with yeast and bacterial overgrowth. The main idea to start with should be to do no harm; put nothing into the gut that isn't soothing and good for it.

I'd be happy to share any more details with anyone who thinks my road to getting better might be helpful for theirs.

Best to you all.

I've just been prescribed 200mg nizoral (the antifungal) for four weeks to treat various chronic yeast infections, mostly on my skin -- but I'm fairly sure with all my gut problems, that I've got systemic candida issues.

I have been on anti-candida diet for a long time. Also gluten-free, no corn, potatoes, or dairy either. Have also been through many courses of various anti-candida supplements.

I'm nervous about taking Nizoral because of the potential for liver toxicity and the precariousness of my current decent health. While I feel it might help, I'm also afraid it might cause a setback.

My question is: what has been other people's experience with nizoral orally?

1. Did you tolerate it or have lots of side effects?

2. Did it address your yeast symptoms or did they recur very soon after stopping medication?

3. Did you experience any improvement in your gut-related symptoms?

Thanks so much!

Hi all,

Has anyone here had to deal with taking antibiotics while recovering from gut damage due to celiac disease?

I have an acute sinus and eye infection that I need treatment for...but I am terrified that taking the antibiotics will undo all the healing over the last three years and encourage candida growth that will cause new gut damage.

Does anyone have advice or experience with this issue?

Thanks!

Hi you all,

I haven't been checking in here for awhile.

I'm on month four of the anti-candida diet. Doing much better, though still some bad days.

I wanted to check in with you all about Candex. I just started taking it yesterday. Anyone else taking it?

Have we already talked about this website? Open Original Shared Link

It's the most concise and clear description of my health problems over the last two and a half years.

I think the enzyme piece of this -- as some of you have mentioned before -- may be critical.

I stopped eating all the foods I developed intolerances to, am taking targeted vitamins for healing (biotin, zinc, fish oil, anti-oxidants, etc), and have taken VSL3 and Threelac for probiotic. I've been taking Solaray's Yeast-Cleanse (mostly caprylic acid) as well as raw garlic and fresh lemon juice. And non-psyllium fiber when I remember.

BUT I think the enzyme part has been missing for me -- that perhaps I need something to breakdown the cell walls of the yeast so the anti-fungals can do their work better.

I've also started on a minimalist protocol for CFS -- as described by this researcher who has worked with Amy Yasko (leading doc who does biomedical treatments for kids with autism) -- based on the theory that people with CFS-like problems have similar blockages in their methylation pathways as do autistic kids. People with CFS have seen some success with this. Anyway, I posted a link to the paper about this over on Rachael's thread, but can post it here if people are interested. I'm only about a week into it.

Anyway, I was curious to hear how other people's experiences are going and who else might be doing Candex.

Thanks!

Florence

Hey you all. I'm dropping in for expert reaction from all you long-time wise warriors...

This is a protocol for unblocking the methylation pathway that does not directly involve chelation but does involve detoxing through specific supplements. It's borrowed from Dr. Amy Yasko who is a leading practitioner of biomedical treatment for autistic kids and is now being used with some success with people with CFS.

Reactions?

Open Original Shared Link

Thank you thank you!

Florence

Hi Paula,

I take the peppermint oil in capsules. I read some studies a couple of years ago that it helps with IBS -- so on days that I feel sore or gassy I take a capsule and it seems to help. Although you have to put up with burping and breathing peppermint oil. It could be worse!

Zinc, E, C, and biotin might help with those mouth sores. Also a two-week run of echineceae and goldenseal.

Are you getting enough fiber in your diet? Could that be part of the C problem? I started adding flax seeds to my goat yoghurt in the morning and flax oil and flax seeds to my oatmeal (when I have it). As well as the fiber I take with water. Also fish oil -- are you taking it? I think all these things help with moving things along.

Do you get time to walk or anything physical like that?

I know for me when my system starts to lean towards constipation that I instantly feel sicker -- it feels clear to me that the stuff that's stuck is giving off toxins and with a leaky gut, the toxic stuff makes me sick all over.

And you know to stay away from dairy and bananas?

Good luck to you!

Hi you guys,

I haven't been on here awhile. Lots going on in our lives, but I have been wanting to check back in and report on my progress and hear how you all are doing.

One quick tidbit: I've been reading a useful yeast thread over on the Low Oxalate Diet yahoo group and there are a ton of studies showing that damaged guts don't produce adequate biotin and that biotin is key for stopping yeast overgrowth. Most folks over there are taking 5-10mg of biotin a day -- I have been as well for some months. Some people over there have had success treating their yeast just with biotin and an anti-candida diet. Anyway, I wanted to mention that.

I've been on an anti-candida diet since just after Christmas. For me, it's been the final piece of the puzzle after two plus years of leaky gut, joint pain, chronic fatigue symptoms, etc. It feels like my guts are finally healing and that my body is getting better overall. It's been a slow road, but fairly steady progress.

I don't eat wheat, dairy, soy, corn, sugar, potatoes, and I limit my intake of high oxalate foods, though since I've gotten better I've been able to push that a little. I limit to one serving of fruit a day and one serving of grains -- brown rice or a Van's waffle. I don't do white rice or pasta or any gluten-free processed stuff except the waffle (it's my one vice). Okay, and occasionally I can get away now with a glass of red wine.

I've been rotating the anti-fungals, in addition to a whole mess of other supplements. I took VSL3 and then Threelac, am now going to take both at the same time. I take a solaray product called Yeast-Cleanse, also oregano oil, black walnut, and milk thistle seed. I drink lemon juice and take raw garlic every day -- I think those last two have been as important as anything else. And I take digestive enzymes and fiber.

If I'm feeling toxic dumping, I take peppermint oil and activated charcoal in addition to the fiber which I think is crucial for moving the junk out of the body.

Anyway, I wanted to report back because I am feeling better than I have for years. Like I said, I think this anti-candida approach has been the final key for me.

Other long-term problems I've had have cleared up since stopping sugar -- one is that I sleep soundly every night now, unheard for me; the other is that my TMJ symptoms in my left-side jaw are hugely improved, that I've had since I was twenty (I'm 43).

I had chronic diarrhea and gas and bloating and dry mouth and a ton of other digestive symptoms. Those are all gone now.

For those of you not eating meat (I do eat meat, but only grass-fed and no pork), I've found that making hummus fresh is a great way to get some wonderful ingredients in your body in a yummy way. Here's the hummus recipe I've been using and modifying:

1 can garbanzo beans

1/2 to 1 can other beans (kidney, black, adzuki)

1 sweet potato (microwave for 5-7 minutes, peel, dump in food processor)

some tahini (however much you like, from a couple T to 1/2 c)

some olive oil (a couple to a few Ts)

juice from 1-2 lemons

fresh garlic to taste

salt and pepper to taste

I dip carrots into it, but you could put it on anything!

One other note: our healthfood store just started carrying cassava chips -- they taste amazing and have twice the fiber of potato chips. I can't eat many of them, but for a real junk-out treat that's not too junky, you might try them. Can't do the BBQ flavor though because sugar added.

Best to all of you!

Florence

Hey you all,

Our neighborhood chain drugstore has activated charcoal.

I've found it essential to keep things moving through me -- digestive enzymes, fiber, and activated charcoal to mop up the ick, as well as flax oil and fish oil. I feel sickest when things get stuck.

My two years of joint pain is all but gone now, amazing. I think I've reached a plateau on the gut health though and need to get back on the antifungals. I've just been doing raw garlic and lemon juice for the last couple of weeks. My diet continues to be pretty strict, though I cheat with the occasional glass of red wine.

Some of the sites I read say that if you're really suffering from yeast die-off to have a small bowl of brown rice. I actually still have one solid serving of oatmeal or brown rice per day. I can't tolerate potatoes or corn or pasta or any other carbs like that. Oh, right, and those gluten-free Van's waffles drenched in butter -- one a day, I can't help it. It's my equivalent of a cookie.

My sleep is better than I think it's ever been though I still don't have a ton of energy. Some days better than others.

I find that much exercise is VERY depleting to me. The epsom salts baths help then too, but I think my body isn't ready for much more than a little yoga and walking.

Take care everyone!

Florence

Thanks everyone for all the good info!

A couple of questions:

Is anyone else taking Threelac or VSL3 for probiotic?

I'd like to look into the human probiotic you mention Moldlady -- is there a website?

The YC website: that link takes you to a login page. If you aren't already a member, is it too late to join, then?

Be well!

Florence

What's YC?

Do you know is the mold issue with corn only for the dried processed corn by-products or for fresh corn as well?

Hi all,

I wanted to put an update here and to hear from other folks who have been following the LOD.

I've learned a few things in the past month (and am at about month 5 on the LOD):

1. The candida piece had to be dealt with head-on in my case. Some people report yeast issues clearning up on the LOD on their own. But I'm a month into a strict anti-candida diet and it's made a HUGE difference for me.

2. The progress I initially made on the LOD, in the first month, disappeared in the face of new symptoms -- oxalate and candida. In my case, I think the huge amounts of calicium I was taking was contributing to yeast problems. AND that I was eating more fruit and white rice on the LOD.

3. I did NOT notice the first time I looked through the yahoo low oxalate group materials that we were supposed to start into this diet SLOWLY and work down from medium to low oxalate eating over time. I read a lot of their materials and didn't see this anywhere. SO I went low oxalate abruptly and I think mobilzed oxalates that have stored themselves elsewhere in my body. For example, for the first time in my life I have occasional vulvar pain and kidney pain. My shins burned constantly on LOD until I started eating medium oxalate foods again. SO, I think it's imperative to work down gradually to a LOD. I wish I'd known!

4. The dramatic improvement in my hip joint and finger joint pain seemed to happen after starting LOD, so I think the LOD may have helped heal my leaky gut, but I was still bloated/gasy/diarrhea until I started on the anti-candida diet. And a side note: while my joints don't hurt (finally!), my knees click when they never did before. This happened after going LOD. Another woman on the LOD yahoo group reported this as well. I think it's oxalate-related also.

5. So, here's a quick summary of my current diet and the progress I've seen in the last month:

I'm cow diary free (limited goat and sheep cheese and yoghurt); gluten free; soy free; no pork; only grass-fed beef; no nightshade vegetables; no high oxalate foods; no refined sugar or fermented products and limited fruit; few grains (no more white rice! -- gluten-free oatmeal and some brown rice); no corn products. (note on corn: I think for me it's the corn products that are a problem -- I can eat fresh corn, but do so rarely -- processed corn anything is definitely a problem).

To all the other supplements I was taking on LOD (biotin, zinc, arginine, NAC, glutamine, COQ10, fish oil, Vit E, etc etc) I've made these changes: I'm taking Threelac instead of VSL3 and do think it's better, I've way reduced my intake of calcium citrate, and I've added: raw garlic, fresh lemon, daily fiber, activated charcoal, flax seeds, Solaray's YeastCleanse, milk thistle, red clover tea (those last two to support the liver in detoxing), and intermittent echineceae/goldenseal. I think the raw garlic is hugely helpful. I've been focusing much more on clearing out the intestines. If I were brave I'd go get a colonic, but I'm not brave.

I had two pretty miserable weeks after I started on the anti-candida diet, worse symptoms in every way plus nausea. And then the clouds parted and for about a week and a half I've been much much better. First time in over two years I've had close to normal digestion. My energy is coming back. There are still "die-off" days but they seem to last a day now rather than days.

How are you all doing?!?

Florence

The hard avocados are the best to buy -- they really don't take that long to ripen. The overripe ones are gross.

I used to melt some sliced manchego cheese on a rice cake and then slice the avo on top and salt and pepper. But I'm not eating rice cakes right now -- just to keep the starch down. So I'm having a few very thin rice crackers (I forget the brand) with the avo. Or I just cut the avo in half and squeeze some lemon juice on and add salt and eat with a spoon.

I find on this diet I need to eat a LOT of fat and protein to keep from getting hungry ALL the time. So the avo is good. I put a LOT of butter in my oatmeal and on my Van's waffle. Also Thai coconut curry (with whatever in it) is good if not too spicy -- the coconut milk is satisfying and is supposed to be a good natural anti-fungal.

I'll get the recipe for the hummus I've been eating -- our babysitter makes it and shares it with us. It's the BEST thing I've ever tasted. It's nothing like the store kind, which I largely cannot stand.

I avoid nut butters altogether. I'll eat a handful of nuts -- although even the raw cashews smell vaguely moldy to me so I probably should stop. I do sometimes eat pumpkin seed butter with a tiny bit of fruit-only jam, with rice crackers. But I don't love pumpkin seed butter.

I sometimes cheat and eat salami (organic) -- pork is NOT a meat I generally eat and the salami has wine in it. But it's small amounts and it satisfies.

The other thing is that with all the other stuff I'm taking, sometimes I feel like I'm having snacks when I'm really just having supplements -- lemon water, raw garlic, Threelac, fiber in water, red clover tea, etc. So sometimes I think I'm hungry but after I do one of those, I'm not hungry any more and it gets me to the next meal.