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Candida Related? Doctor's Stumped


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#1 ilikepie

 
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Posted 27 December 2008 - 10:01 PM

I have been seeing two doctors: A naturopath, and a regular MD. After receiving the results back from a test I took with my naturopath, I was prescribed fluconazole for an intestinal bacterial overgrowth. I took three doses of it over the course of a few days, and COULD NOT have felt better. It was the most amazing thing that has ever happened to me. I didn't realize that other people feel that fantastic. I was upbeat, had loads of energy, I didn't feel nauseous, and I had no pains. I was so happy I was literally in tears.

That lasted about two weeks.

My symptoms started coming back: a constant pain in my lower left abdomen, headaches, nausea, diarrhea, and to me what seems to be EXTREME fatigue. I can lay in bed ALL DAY and still be exhausted by seven pm and fall asleep. Then I sleep for ten or more hours and still am exhausted. It's horrible. And it's not that I am simply getting too much sleep or not exercising. On the days I have to go to class or work, I get less sleep, and am still exhausted. I try to exercise (something I used to love), but I am too tired, and will feel nauseous.

So my naturopath prescribes me the fluconazole again. This time it doesn't work as well or for as long, but it did help a little. She told me that if it didn't work the second time, she wanted to see me again. Basically she is completely stumped, as is my regular MD.

My regular MD thinks there must be something going on that is related to the fluconazole (obviously, since I felt AMAZING), he just has no idea what it could be.

My MD ordered me a slew of tests. The results: all normal (story of my life).

I would also like to add that I don't eat anything that candida thrives on. Cane sugar gives me a migraine so I don't eat it. Fruit exacerbates the pain in my side, so I stay away.

I'm frustrated that I am not happy like I want to be. I want to be outgoing and see friends and have fun like I used to. With the way I feel, all of these things seem so unattainable. I don't know if it was a blessing or a cruel joke that I got such a small taste of what that was like again.

I don't know if it's related, but I don't want to leave anything out. I used to get horrible canker sores in my mouth before I went gluten free. I would get them basically non-stop, and normally have around fifteen at all times. I've been without them for quite some time, but I have started getting them again. Not as bad, as I have about half a dozen, but it seems odd that they were gone and now they are back.

I'm at a loss. I feel like I am at the end of my rope and I don't know what to do. It's hard for me to go to work or talk to people because I just feel like I am going to break down in tears. Any thoughts or advice would be greatly appreciated.
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#2 mftnchn

 
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Posted 28 December 2008 - 03:12 AM

Given that it helped at first you would think it did have something to do with mold or fungus.

Just thinking of what happened to CarlaB when she got rid of her mattress that she discoved had black mold. She felt really great for about three days then much worse for weeks. Detoxing the mold was very awful.

Another thought is that it is more than just candida but imbalance of gut bacteria in general or some bad gut bacteria. With this in mind, you might check out the specific carbohydrate diet, sounds like you might be close to this already. This diet helps kill off the stuff that shouldn't be in the gut or has grown too strong. Then using good probiotics to replace could be helpful.

Just speculating.
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4/2007 Positive IGA, TTG Enterolab results, with severe malabsorption: Two DQ2 celiac genes--highest possible risk.

gluten-free since 4/22/07; SF since 7/07; 3/08 & 7/08 high sugar levels in stool (i.e. cannot break down carbs) digestive enzymes for carbs didn't help; 7/18/08 started SCD as prescribed by my physician (MD).

10/2000 dx LYME disease; 2008 clinical dx CELIAC; Other: hypothyroid, allergies, dupuytrens, high mercury levels

#3 veggienft

 
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Posted 28 December 2008 - 07:55 AM

You might want to try eliminating nightshades from your diet. Nightshades include tomatoes, peppers, potatoes and eggplant. After a couple weeks, challenge yourself with each in turn.

Some gluten sensitive people get nightshade-intolerant after some time on a gluten-free diet. The theory goes, we were always nightshade intolerant. But the gluten-induced "zonulin dump" places nightshades and all other food into the bloodstream where the bloodstream's immune system digestes it. Now your food stays in your digestive system, and you're discovering what it can tolerate.

When tomatoes were introduced into Europe, critics claimed they would make people sick. Tomatoes, like all nightshades, are related to deadly nightshade. Looks like, for some of us, the critics were correct.

Nightshades also include tobacco, ginsum weed and the belladonna plant (angel trumpet).

..
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#4 AliB

 
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Posted 28 December 2008 - 08:11 AM

I think I am going to have to do another standard post to copy and paste into this and similar threads that pop up all the time - a dollar for every answer and I'd be a rich woman......

If your favourite plant is suffering, it is no good painting the leaves green. You have to change the environment for the plant. If you have fed it and watered it and it is still suffering then you will have to change the medium it is growing in.

The body is no different. You have to change the environment within the body. Just taking the Fluconazole or Nystatin or whatever will not work on its own.

Whilst you are still feeding the pathogens they will come back.

Yes, it worked briefly, but the effect will not last. It works on a 'survival of the fittest' system. Those yeasts that are strong enough to resist or survive the medication will then rebreed and have lots of little resistant babies (your doctor really ought to know this!!!).

You then are encouraging them by eating gluten-free goodies that they LUURVE. You have to change the medium that is contributing to the 'wilt'. Maybe you have restricted your diet considerably, but you may still be consuming a food source in there somewhere, particularly if you still eat anything from certain carb groups.

Unless you change their environment by taking their food sources away and filling up the gaps they leave with loads of good guys in the form of live probiotic yogurt and capsules, etc., they will just come back with a vengeance, and the next time, because they and their offspring are now resistant, the medication will not work. The probiotic bacteria will help to fight them and that is a powerful weapon.

I have found that I get the burst of energy for a few days, like you, when I have tried different things, like changing my diet, but they still come back and down I go again. I have realised that unless I remove all their food sources completely, I will never win. Although you have removed sugar and fruit, something you eat is still feeding them.

There are quite a lot of us, including Sherry (mftnchn) who has posted above who are following the Specific Carb Diet (SCD). It cuts out the troublesome carbs, sugars and starches that feed the little beggars, and encourages 'reflorestation' with good probiotic sources to help the gut heal properly.

For many of us, gluten is sadly but a very small part of the jigsaw and is just one food source. Take that one away, they adapt to another, then another, and so on.

The SCD takes the lot away in one fell swoop so they have nowhere to turn and we are then finally able to control them rather than them controlling us. It is not a 'magic' remedy and can take a while to work but any progress even slow, is better than no progress.

Hippocrates, who is often hailed as the Father of Medicine said 'all disease begins in the gut'. He also said 'let food be thy medicine'. Just as food can often be a very contributory factor towards us getting in the mess in the first place, it can also be a means of getting out of it. It just depends on what you put in your mouth. It is a shame doctors don't consider that aspect from their medical 'Father'.
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Ali - 50 - struggled with what I now know to be GI symptoms and poor carb digestion for at least 35 years! Diabetic type II (1997). Mother undx Celiac - lifelong diabetic Type 1 & anemic (plus 1 stillborn and 10 miscarriages after me). Father definitely very GI.

Stopped gluten & dairy, Jan 08, but still other issues so dropped most carbs and sugar and have been following the Specific Carb Diet (SCD) since March 08. Recovery slow but steady and I can now eat a much broader range of foods especially raw which are good for my digestion and boost my energy level.

Not getting better? Try the SCD - it might just change your life.........

#5 dilettantesteph

 
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Posted 28 December 2008 - 10:22 AM

When the intestines are inflamed due to celiac it makes a really good environment for candida. I don't have a link for you but I found that out when I was having my own candida problems. It just keeps coming back until your intestines heal up. For that you have to make sure that you are really gluten free. The FDA has still not set the standards for gluten free. They are supposed to do it soon at 20 ppm, but now there is still a lot of gluten free stuff out there at 200 ppm which is too much for most people. I keep to stuff made in dedicated facilities only. Also I avoid restaurants. Once you get yourself healed up you might be able to handle more incidental gluten. I suggest that you be really careful until you are healed and then start taking chances. Also BioK helped me during the healing stage. I hope you can get happy again soon.
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#6 RiceGuy

 
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Posted 28 December 2008 - 10:57 AM

What worked for me was caprylic acid capsules (aside from the dietary restrictions). I recall taking that for two bottles, and apparently didn't need it anymore. It worked wonders too.

Do you know if the medication you were taking is gluten-free?

If the canker sores are back, it may be an indicator of a certain amount of gluten sneaking in someplace. Perhaps this is also contributing to the reduced effectiveness of the med.

I just looked up Fluconazole, and it's apparently the same as Diflucan. The side effects are scary.
http://www.medicinen...ral/article.htm

Frankly, it surprises me that a naturopathic doctor would reach for such a drug, especially when safe, natural things are readily available. Here are two products you may want to consider:
http://www.nowfoods....mp;item_id=2790
http://www.vitaminsh....jsp?id=VS-1742

Aside from avoiding sugars, it is also advisable to avoid yeasts (such as yeast risen breads, mushrooms, etc) and vinegars (including ketchup).

HTH
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#7 ilikepie

 
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Posted 28 December 2008 - 07:31 PM

Cutting out nightshades seems like it might be a good thing to try. I don't eat potatoes or peppers, but I do eat tomatoes occasionally, like twice a month maybe. And also trying to avoid ALL things that could feed the yeast. And I'm definitely going to look into the caprylic acid capsules. The only problem with the ones I've looked at so far is that they contain rice, and since going rice free, my horrible acne has really cleared up.

My naturopath did try to do some natural remedies for the yeast before she did the test and we found out yeast was the problem. The place I sent my test to actually tested the yeast to see what would kill it, and the natural stuff didn't do the trick, but the fluconazole did, that's why it was prescribed. I did make sure to look up the medication before I took it and it was gluten free.

I don't believe I'm getting glutened anywhere because I don't eat anything packaged or that I don't prepare myself. All of my toiletries and anything that comes into contact with my body has been checked out. Plus the way my brain and body feels when I am glutened is different from the way I am feeling now. So I feel fairly confident that is not a factor.

I guess I am just feeling a little bit lost about how to cut out everything that yeast feeds on. I already don't eat: fruit, sugar, rice, potatoes, any gluten free goodies, I take probiotics, and there's no yeast in my vitamins. Yogurt seems like a good idea, but I can't tolerate dairy so that's off limits. I do eat honey, is that a no-no? I feel like I've heard a lot of conflicting information about this diet so I'm not sure what's what.
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#8 AliB

 
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Posted 29 December 2008 - 03:53 AM

I don't know where you have heard the conflicting information about the SC diet from - I have only seen and heard good things and certainly have been benefitting from it myself.

Honey may be an issue. Although it is allowed on the SCD some have found that they don't start to recover until they cut that out too. The main problem is that most honey we buy these days - unless you can get a good source of raw honey, is heat treated which destroys the enzymes and some of the nutrients, rendering it into little more than just sugar.

I can't tolerate dairy either, but I can tolerate yogurt. The 24-hour cultured yogurt that is recommended on the SCD not only contains a much higher concentration of the good bacteria than the commercial 6 - 8 hour cultured stuff, but the lactose is virtually all, if not completely digested by the bacteria and the casein is rendered into a more digestible form, so even those who are dairy intolerant often are ok with it. I use cows milk, or goats milk which is sometimes more easily tolerated by those who can't cope with cows milk.

Some on the SCD thread have been making the yogurt with coconut milk and other 'milks', too. Other fermented food and drink is helpful too like sauerkraut, kvass and kefir, etc.

I thought Naomi Devlins' comment was good on her website (link below) where she states that she didn't really get better until she cut out things like honey and, funnily enough the yogurt, for a while but she can eat them all again now (see her response to my comment near the bottom of the comments section on that page). She like many of us has found the only relief and healing through the SCD.

http://milkforthemor...ible-truth.html

I know that it is not gluten that has been behind my health issues and awful fatigue but my body's inability to digest carbs in general and the Leaky Gut. After having been on the SCD for 9 months I no longer react to gluten, although I have chosen not to consume it at least for the next year or so until my gut has fully healed.

It has been a slow progress - made slower by my inability to be as disciplined with the diet as I would have wished, but it is still progress (I am also not very good at going to bed early enough which also doesn't help!!!). I do have more energy - most of the time I can now run up the stairs which would not have been possible a year or so ago.

Elaine set the foods on the SCD as 'legal' and 'illegal' because she wanted us to realise that consuming the 'illegal' foods, even in small amounts, would restrict or even halt the healing process.

Those of us on the diet have found the SCD thread on the 'Other Food Intolerances' section to be a godsend as we are able to give each other much needed support and encouragement.

If you feel like joining us you are very welcome - we usually suggest if nothing else, to just try the diet for a month and see if it helps. Most see a result within the first 2 weeks and some within the first 2 days!

Ali.
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Ali - 50 - struggled with what I now know to be GI symptoms and poor carb digestion for at least 35 years! Diabetic type II (1997). Mother undx Celiac - lifelong diabetic Type 1 & anemic (plus 1 stillborn and 10 miscarriages after me). Father definitely very GI.

Stopped gluten & dairy, Jan 08, but still other issues so dropped most carbs and sugar and have been following the Specific Carb Diet (SCD) since March 08. Recovery slow but steady and I can now eat a much broader range of foods especially raw which are good for my digestion and boost my energy level.

Not getting better? Try the SCD - it might just change your life.........

#9 clydeshannon5

 
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Posted 29 December 2008 - 02:36 PM

taking probiotics can actually do the opposite of what you are looking to accomplish. I will find the link and get back to you.
shannon
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#10 clydeshannon5

 
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Posted 29 December 2008 - 02:38 PM

Here's what Elaine says. In relation to probiotics (and probiotics are the main reason for making/eating the SCD yogurt): "If you are not on SCD and are sending loads and loads of fermentable carbs down to the colon as most people are... the probiotic bacteria/ae will just make things worse. That is why I think it is so positively awful for the Crohn's and Colitis list to be PUSHING probiotics without the SCD. Wake up guys over there!"



http://www.scdiet.or...q/soybeans.html

hope that helps. where is House when you need him??????
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#11 ilikepie

 
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Posted 29 December 2008 - 06:20 PM

I guess I was just confused about it because for instance, in the SCD diet, you can eat fruit, but if you are trying to kill candida, eating fruit isn't a very good idea. I was confused because I thought that the SCD diet and a diet to kill candida were the same thing, but I guess they are not.

I'm a little confused about how the probiotics could be bad. Is she saying it's just bad if you are NOT on the SCD diet and you are taking probiotics? I was taking a probiotic in pill form, but it was making the pain in my side worse. We make our own sauerkraut now.
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#12 AliB

 
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Posted 31 December 2008 - 09:41 AM

I guess I was just confused about it because for instance, in the SCD diet, you can eat fruit, but if you are trying to kill candida, eating fruit isn't a very good idea. I was confused because I thought that the SCD diet and a diet to kill candida were the same thing, but I guess they are not.

I'm a little confused about how the probiotics could be bad. Is she saying it's just bad if you are NOT on the SCD diet and you are taking probiotics? I was taking a probiotic in pill form, but it was making the pain in my side worse. We make our own sauerkraut now.


Elaine does say on the BTVC site that if Candida is an issue for you it is best to restrict the fruit for a while - it doesn't hurt to have a little, but to just keep to a minimum.

I have been on SCD for 9 months. I have to admit I have not been nearly as disciplined as I would have wished. The Candida has slowed down but is still around.

I did read something too about probios sometimes making things worse if we are still eating high-carb and sugars. Elaine did not trust Bifidobacteria as she felt that given the 'right' environment it could modify into a more pathogenic form.

I have been reading about oral Candida. I wonder if that could be one reason why the fluconazole didn't work either, because those of us with systemic Candida will have it in the mouth. The anti-fungals only work once in the stomach so they have bypassed the mouth completely. But every time we swallow we are taking the stuff back down the digestive tract again. Surely what we need to do is take anti-fungal remedies that start in the mouth.

Food remedies will work better that way - as long as we don't eat food that feeds them and consume herbs and foods that will destroy them then surely we stand a better chance of getting rid of it from the top down.

Here is the link for anyone who can understand the technical side (or you can cut straight to the Summary and get the points from there!)

http://www.ncbi.nlm....f...&part=A2773

I have just started 'oil-pulling' to see if I can get rid of it from my mouth. It's only two days so I will have to see what happens with it. There is a thread on the 'Anything other than Celiac' section. I am just trying to attack the little beggars from all directions!!! I am determined to pull the rug from under their feet one way or another!
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Ali - 50 - struggled with what I now know to be GI symptoms and poor carb digestion for at least 35 years! Diabetic type II (1997). Mother undx Celiac - lifelong diabetic Type 1 & anemic (plus 1 stillborn and 10 miscarriages after me). Father definitely very GI.

Stopped gluten & dairy, Jan 08, but still other issues so dropped most carbs and sugar and have been following the Specific Carb Diet (SCD) since March 08. Recovery slow but steady and I can now eat a much broader range of foods especially raw which are good for my digestion and boost my energy level.

Not getting better? Try the SCD - it might just change your life.........

#13 nijocamus

 
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Posted 30 January 2010 - 03:32 PM

only problem with the ones I've looked at so far is that they contain rice, and since going rice free, my horrible acne has really cleared up.


Hi ilikepie -

Sorry to hi-jack your thread here, but I am hoping you can help me. I think I may be allergic to rice, so I am trying to go rice-free (I am already gluten-free and onion and garlic free), but unlike in the case of gluten, I cannot find any information on what ingredients in foods and products are likely to have been derived from rice and thus need to be avoided. Do you know what ingredients I need to avoid to fully eliminate rice, or do you know any place that I can find this information? Thank you so much!!

(I was going to suggest you look at the SCD, but clearly I am seven steps behind you, so sorry I can't help you out. good luck!)

Suzi
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#14 kart10

 
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Posted 16 July 2013 - 04:20 PM

Anybody know how to reach out to ilikepie ? I am going through a very similar experience and all the labwork is coming normal. I reacted this way to Diflucan but the affects diminished.

 

My doctor now has me tested for lyme. I would like to reach out to her if I could.


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#15 kareng

 
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Posted 16 July 2013 - 04:37 PM

Anybody know how to reach out to ilikepie ? I am going through a very similar experience and all the labwork is coming normal. I reacted this way to Diflucan but the affects diminished.
 
My doctor now has me tested for lyme. I would like to reach out to her if I could.


Looks like she was last on the forum in 2011. You could try to send a personal message? Some people have that set up to notify them by email. If she would still have that email, maybe she would respond.

I know we have had quite a few people who believe they have candida. Perhaps if you used the google function in the top right of the main forum page?

 

For example, here is one currently taking place

 

http://www.celiac.co...da/#entry879782


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