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» LymeNet Flash » Questions and Discussion » Medical Questions » Is it Lyme or Celiac

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Author Topic: Is it Lyme or Celiac
jennygump31
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I am getting confused. If I have a past issue of Lyme Disease and I am having all kinds of problems with digestive, aches, head pressure, bumping into everything (lots of bruses now). Why are they saying it maybe Celiac or Lactose or food allergies and ignoring all the rest?

When I tell them I have had Lyme they loook at me as if to say "so".

Oh why me.

Anyone here have this issue?

Tin you helped me then and good word now?

Jenny


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treepatrol
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Get a LLMD stay away from the Ducks jenny if you had lyme before by your symptoms now you still have it.
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jennygump31
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Plus I was only on abx for 6 mths they would not treat any longer. Once my symptoms went away so did the meds.

Now look at me.


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Cheryl
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It sure sounds like they don't understand that Lyme can and does relapse. For info on this, and the symptoms, see: http://www.lymeinfo.net/lymefiles.html

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Gabrielle
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BTW, my LLMD says, Lyme can cause celiac disease.

And I think it's true because it happened to my husband who got celiac disease at the age of 50 - soon after he had Lyme hepatitis.

Gabrielle


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Foggy
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Jenny: Stupid Duck is, as Stupid duck does.

I had the same BS. Had 2 inconclusive Sprue tests and went on the Gluten free diet. Didn't feel any better and the Gluten free crap was pricey and bland. Worth ruling out, but more unwanted confusion, stress.

[This message has been edited by Foggy (edited 15 July 2005).]


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jennygump31
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guess I need to find a LLMD here. The one I wen t to two yrs ago is 2.5 hours from here and now with the little one it is harder to just get up and go. hmm let me see if I have my old notes and hopefully I can find one here.

my GI doc said that celiac is genetic and that Lyme will not cause it. You either have Celiac or you dont. She said Lyme can trigger it to react but not cause it.

What does your LLMD say about that? Im courious.


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treepatrol
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Lyme Disease and Celiac Disease

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Gabrielle
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The German Celiac Society says that there is no proof that celiac disease is hereditary. It is a only a hypothesis, because approx. 10% of first grade relatives of a celiac person also show signs of damaged gut mucus.

My LLMD told me to stop eating gluten, to avoid getting celiac disease. I told him that hubby had it already. Then he told me that in this case, my hubby also had Lyme.

First, I thought he was mad, but after looking at all the health problems my husband had had in the past, suddenly everything fitted in the picture.

I was too brain-fogged at that time to remember everything he said and I don't know if he has an explanation or if it's just his experience.

Maybe Celiac disease is really hereditary. But theoretically, the 10% of relatives could also have heredited the Lyme.

Gabrielle


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breathwork
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Celiac is an inherited auto immune disease which can lay dormant for decades, only to be triggered by some acute stressful state, such as a death in the family, pregnancy, physical trauma, or another disease state. Or, it can be expressed from birth.

When gluten is consumed, even in microscopic amounts, the immune system is triggered to produce antibodies to the cells that line the small intestine.

Over time the ability of the small intestine to absorb nutrients is compromised. The process of normal digestion is interrupted and can result in what appears to be irritable bowel syndrome or other gastric issues.

Poor absorption of nutrients can lead to a number of other conditions including cardaic issues, cognitive impairment, chronic fatigue, joint pain, osteoporosis, etc...

Generally it takes years to develop the more drastic symptoms, but intolerance to wheat can cause bloating, cramping, the runs, constipation, weight loss or weght gain in the mean time.

Many of the symptoms of lyme are similar to ongoing celiac disease. Whether one has it before the tick bite, or the gene is triggered by the stresses of lyme disease, the result is the same....A gluten free diet is the only and best treatment.

Gluten can be hidden in foods, but can also be in our medications. So if you've been told that you cannot tolerate gluten or that you have celiac, check with your pharmacist about all of your medications.

Many call this an allergy to wheat to simplify dealing with it in public. But, it's much more complex than an allergy, and once triggered by even a small amount of gluten, can take months of gluten free dieting to reverse.

Mine has resulted in an inability to properly absorb fats. Mepron needs to bind with fat to be absorbed by the body, so all those months of mepron for babesia were a waste...at least now we know why it didn't help me.

So yeah, we can have both lyme and celiac disease. The stressors of having lyme can trigger the expression of celiac disease for someone with the genetic predisposition. The symptoms can clearly overlap.

To say which came first, lyme or celiac, can be a tough question to answer. I think it has to be evaluated on an individual basis.

Check out celiac websites for more information..
www.celiac.org
www.gluten.net

www.celiac.com

Carol Ann

[This message has been edited by breathwork (edited 15 July 2005).]

[This message has been edited by breathwork (edited 15 July 2005).]


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cstolow
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One of my daughter's was diagnosed with Celiac. She had the blood work and the biopsy to prove it. She had a history of Lyme but the doctor insisted it was not related. In spite of following the Celiac diet to the letter, she continued to lose weight (40 pounds total) Our LLMD took one look at the pictures from the biopsy and declared it a "lyme gut." She needed to be on the gluten free diet until the Lyme was under control. Once given permission to return to normal eating, my daughter began to regain the weight. She has been off the Celiac diet for quite a few years with no future problems.
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Cap
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Usually a disease that attacks all racial groups are usually not genetic. A genetic disease by nature usually only attacks 'pure breeds', since recessed genes get expressed through inbreeding.

Most dominant genetic diseases usually end up in the termination of the blood line, so it's usually self limiting.

And with most genetic diseases, they know what DNA is 'faulty'.

That's why diseases like ALS, MS an Celiac are usually not genetic. Even the scientific community admits that these diseases are rarely genetic in origin, and they can strike any ethnic group.

That's why still to this day, they have not found the genes that cause these diseases, because it's probably not a pure genetic disease.

It's probably a combination of factors, mostly environmental.

Most real genetic diseases, they can tell you what ethnic groups are affected and what genes are expressed.

That's why in America, genetic diseases are very rare, because we are an ethnic melting pot. And that's why inbreeding is not legal, so this issue is avoided.

When you hear those reports that say 'scientists may have found the breast cancer gene' articles usually end up not getting any followup, because there really can be 100 causes for breast cancer. They will be looking forever for the 'one evil breast cancer gene'.

Same with heart disease, stomach problems, etc.


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breathwork
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Cap....Hopefully this article will address some of your concerns...


Ann Intern Med. 2005 Feb 15;142(4):289-98. Related Articles, Links
Click here to read
Narrative review: celiac disease: understanding a complex autoimmune disorder.

Alaedini A, Green PH.

Department of Neurology and Neuroscience, Cornell University, New York, New York 10021, USA. [email protected]

Celiac disease is a common autoimmune disorder that has genetic, environmental, and immunologic components. It is characterized by an immune response to ingested wheat gluten and related proteins of rye and barley that leads to inflammation, villous atrophy, and crypt hyperplasia in the intestine. The disease is closely associated with genes that code for human leukocyte antigens DQ2 and DQ8. Transglutaminase 2 appears to be an important component of the disease, both as a deamidating enzyme that can enhance the immunostimulatory effect of gluten and as a target autoantigen in the immune response. Sensitive and specific serologic tests, including those for anti-transglutaminase antibody, are facilitating fast and noninvasive screening for celiac disease. Thus, they are contributing to a more accurate estimate of the prevalence of the disease and its association with other disorders. Celiac disease is associated with increased rates of anemia, osteoporosis, cancer, neurologic deficits, and additional autoimmune disorders. A gluten-free diet is the mainstay of safe and effective treatment of celiac disease, although its effect on some of the extraintestinal manifestations of the disease remains to be determined.

Publication Types:

* Review


PMID: 15710962 [PubMed - indexed for MEDLINE]

[This message has been edited by breathwork (edited 16 July 2005).]


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Lyddie
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Celiac is harder to diagnose than many MD's will say, but there are basic blood tests, and HLA typing tests will also tell you if you have the genetic type for celiac. My daughter also had an endoscopy with biopsy to test for celiac, which was well worth doing.

I have posted several times about my daughter's situation, under headings about fluid retention.

She does not have celiac. We thought her GI and fluid retention issues might be related to celiac, and then we thought it might be the Lyme (her treatment ended last year) but she tests completely negative now for Lyme and all tick-borne diseases at MDL (this is a change) and celiac tests were also okay.

What she does have is yeast, all through her GI tract, and this has caused "leaky gut" or, more officially, intestinal permeability. The symptoms of this are very similar to celiac.

Mainstream doctors do not diagnose or treat this. I am very conservative about these things and found an excellent, board-certified, award-winning MD, covered by insurance, who still deals with leaky gut issues.

The first step was a lot of fluconazole for yeast, with vey high quality probiotics. This helped the GI problems a lot.

Leaky gut causes problems resembing food allergies. Going gluten-free helped her GI pain and did a little bit for her swelling. But now she is off almost every kind of food (!) except chicken, fish, vegetables (no corn), rice, and green apples.

This diet has helped tremendously. It is not permanent, it is only until her gut heals. She is also taking Similase, a combination of enzymes, and will take L-Glutamine for healing at some point.

My daughter has type 1 diabetes, and long-term antibiotic treatment combined with higher blood sugars may have made yeast a much worse problem for her than you. She also was on zoloft, which seemed to affect her GI tract and contibute to her problems in some way.

None of this may be relevant for you, but the point is, it wasn't celiac, although it resembles it (and people with type 1 diabetes are very prone to celiac) AND it wasn't Lyme either. Frankly, her problems were a result of treatment for Lyme. I'm grateful she was treated, but we're going to spend a long time on clean-up now.

Editing later (cleaned up typos) to add: my daughter did her first "food challenge" today, ingesting a lot of milk every few hours to see if she is sensitive to it. The result (in order of appearance over a few hours): stomach pain, nausea, weakness, dizziness, "feeling weird," aches, very frequent urination, swelling w/fluid, and bloated stomach..and very high blood sugar (300's).

Some of her doctors have insisted that all these symptoms were Lyme, but luckily I took her off antibiotics 16 months ago when this all started. I am still on abx and need them, but she doesn't.

Aunty, ArtistDi and others, it is also very conceivable that meds went directly into her bloodstream from the leaky gut, rather than going thorugh her liver first, thus causing some of the weird reactions to meds. This could explain the worsening w/zoloft perhaps-?

[This message has been edited by Lyddie (edited 16 July 2005).]


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achey
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IT could be both!
Whos to say LD is not an individuals precipating factor, or stresssor to devloping celiac disease, and why wouldn't CD flair chronic untreated or unresolved LD?

That said, my son and I both have CD and chronic LD....
I don't know which I had first...knew I was gluten sensitive as a child but didn't get CD dx until 3 yrs ago, after a skiing accident showed poor bone density. I can also track my bull's eye rashes to childhood. I was Dx LD last fall.
My son went off gluten 2 yrs ago, and was dx LD this May.

Both of us got improved health going gluten free. I got great increase in bone density. My son, better concentration and less rage, GI problems gone.

But another important thing to note is that gluteous grains are difficult for any non- rumigant mammal to digest. Rumigants, or mammals with multiple stomaches(cow, goats, and other cude chewers) are designed to digest gluteous grains. In us human types, any undigested gluten can get pocketed at the end of the smal intestine...beginning of large intestine and just sit and ferment above the appendix. Fermentation means alcohol, sugars and yeast. We can have our own personal factory!

So anyway, anyone on a yeast prevention diet, or with allergies, Gi problems and joint problems can benefit from a gluten free diet. And anyone who is human...yes I know rummigants can get LD.

A good book for research, Dangerous Grains.....


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surg
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I have been dealing with this issue since I got lyme. All of a sudden gluten makes me very ill. I tested borderline positive for gluten and casein sensitivity. Have I suddenly become celiac? That is my question. I now have a gluten free diet and a gluten free kitchen and I do feel much better.
Almost everyone(LLMD and ND's) tells me though that lyme eats away the intestinal lining and causes leaky gut and this causes gluten intolerance. So when I am feeling better I will try wheat again but not until then.
A really good forum for celiac is on Delphi Forums.

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pippy
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If a person has regular bowels that got better with antibiotics, then is it safe to assume they probably do not have celiac?

I know I am sensitive to wheat and gluten but full blown celiac has major GI problems involved right?

there is a difference between gluten sensitivity or wheat problems and celiac right?


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surg
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Celiac is an autoimmune disease to gluten. It is different than an allergy to wheat. In celiac disease the body attacks itself and can damage everything-GI, brain, liver etc. Alot of the symptoms are similiar to lyme in many ways. I thought I just had celiac disease for 3 years before I got the lyme diagnosis. Could be both. Most celiac patients have loose stools or constipation but not all. It is just as controversial as lyme. There are blood test for it but it has to be at a good lab(sound familiar). The golden standard is an intestinal biopsy but it depends on the quality of the doc reading it as well. Not all celiacs are thin. It can cause obesity as well. Delphi forums is a really good site for information.
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Cap
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quote:
Originally posted by surg:
Celiac is an autoimmune disease to gluten. It is different than an allergy to wheat. In celiac disease the body attacks itself and can damage everything-GI, brain, liver etc. Alot of the symptoms are similiar to lyme in many ways. I thought I just had celiac disease for 3 years before I got the lyme diagnosis. Could be both. Most celiac patients have loose stools or constipation but not all. It is just as controversial as lyme. There are blood test for it but it has to be at a good lab(sound familiar). The golden standard is an intestinal biopsy but it depends on the quality of the doc reading it as well. Not all celiacs are thin. It can cause obesity as well. Delphi forums is a really good site for information.

Yea, it's a very confusing condition. I myself don't know if I am or not. Just another patient that is sick that does not get all of the answers.

I tested negative for the biopsy, but I test positive for the AGA blood test.

Who knows.

I am avoiding gluten just to increase my immune system as much as I can.



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breathwork
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After having positive blood work my biopsy was also negative...My GI, a leading guy in celiac disease research, said that he sees this often..that most likely I am in the early stages of activation of celiac disease....

So I'm one of the lucky ones who can avoid the most severe symptom profiles by going on a gluten free diet before the autoimmune response severely damages my small intestine.

If I eat gluten now I pay for it for a while...lyme symptoms get worse for a few days like a mini herx..gassy, loose stools etc...

I could not distinguish this before going on the diet for a few months. Now it's a clear difference if I ingest a small amount of gluten.

My mother was quite ill from celiac before diagnosis and is much better two years later....She is why I was tested. Both of my children also have positive blood work for celiac.

I don't really care which came first, the celiac or the lyme. I just want to get better. My lyme doc says that many of his patients have celiac as well as lyme. I can't help but wonder if there is a connection between our more difficult cases of lyme and celiac...


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Gabrielle
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Breathwork,

do you mother and children also have Lyme?


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Lyddie
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Another good place for information is www.celiac.com

It can take years to diagnose celiac. BIopsies can miss the spot(s) where the villi in the GI tract have been afffected. Or biopsies may be done too early, when the villi/linging have not yet been visibly affected.

Another big problem with diagnosis is that if you have tried going gluten free, you then have to go back on gluten for a fairly substantial amount of time (opinions vary, but could be up to 6 months) to get accurate blood tests or biopsy. This means a huge amount of suffering to get a positive test, and also risking further damage.

It is very motivating to have a positive test. The celiac life-style is difficult, and expensive, and knowing for sure helps with the stress. But many decide to remain gluten free and forego the reliable testing rather than go back on gluten.

Lyme has caused other autoimmune problems in our family. We have all had positive autoimmune labs, like ANA's, as well as skin biopsies. It is very conceivable that Lyme could trigger celiac.

On the other hand, it is very itneresting to read that Lyme itself may cause leaky gut. As I posted earlier in this thread, Lyme treatment (antibiotics causing or aggravating yeast in the GI tract) can cause leaky gut. So if the disease AND the treatment can do this, then most Lyme sufferers might want to omit the wheat!

p.s. Jenny, have you gained weight or do you have fluid retention? My daughter's fluid retention/yeast/ leaky gut/food allergies also caused head pressure, GI pain, bruising (from stretched skin I think).

[This message has been edited by Lyddie (edited 18 July 2005).]

[This message has been edited by Lyddie (edited 18 July 2005).]


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jbgoth
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Lydie & Breathwork,

I am also having major problems after 6 months of ABX for long term lyme.

I had stool testing done which showed i have only had a +1 of beneficial flora. I should have a total of +12. I also have a dysbiotic bacteria called citrobacter freundii.

I also have yeast in my GI track. The test showed i have 50% too much yeast. There were no parasites found.

Im positive i have leaky gut.

I have been trying for months to heal my gut from the ABX.

I had my blood tested for food allergies in December. I eliminated what i was allergic to. However, it hasnt helped. It seems like im allergic to everything now. Im trying to drink plain Kefir, but i think im even allergic to that.

When i have a reaction, it starts by my arms burning. I also get terrible fatigue, gas, bloating and a headache. It seems like it takes forever to recover from eating something wrong.

Im on the candida diet and i stay away from gluten.

Before ABX, i could eat anything i wanted. I didnt any food allergies (that i was aware of.)

I have been plagued with vaginal yeast infections. I have had the Strep B virus 3 times this year.

Im getting extremely frustrated. Im wondering if i will ever be well.

Do you have any suggestions?

Thanks,

Jordan

------------------


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ibrakeforticks
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www.enterolab.com

Lots of info on this website. You can also order a stool sample kit from them that you don't need to do through a doctor.


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Lyddie
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You sound just like my daughter! She has zero normal flora and was having repeated yeast, Klebsiella and strep gyn.infections along with the GI stuff, headache, mood swings, weakness etc.

Allergy blood tests won't pick up these food allergies..they are of a different nature (not IgE mediated). The reactions can take hours or days to show up, which makes the situation very confusing.

Now that my daughter ahd done the whole elimination diet for 3 weeks, it is easier to see what is happening. She added milk on Saturday and is still sick! There are stages to the sickness. Yesterday, more than 24 hours afer havng the milk, she was lying on the couch crying a lot, too tired to do anything. This is not like her at all.

I was tryiing to do a gut-healing regimen for her myslef, but, after seeing this good doctor, now know that everythign ahs to be done in the proper sequence. He's going to do some more fluconazole once we ahve the allergies identified (no point in healing the yeast while food sensitivities are still inflaming everything. He is also waiting for the L-Glutamine.

I suggest a really good alternative doctor, or a regular "board-certified" mD who knows leaky gut (maybe you coudl get a referral iin your area) combined with a nutritionist.

Kefir would set my daughter off. She was eating frozen yogurt to ease her pain, but now we know that the milk in the yogurt was contributing to it!

I have posted her whole eliminition diet someplace close. She is off gluten, dairy, citrus, tomatoes, corn, peanuts, red meat (opitonal), sugar, grapes, and a few others. Lots of rice, rice crackers, rice tortillas, rice cakes., rice cereals,chicken/fish, lentils/split peas, veggies (no corn), cashews, potatoes/sweet potatoes.

We can sympathize! Hope you can find a good person. Sometimes chiropractors know about this stuff too...or can refer.


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mlkeen
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I have lyme and celiac, only mild digestive symptoms( I wrote off to age) so I didn't know. Llmd picked up on celiac as the reason I had mineral difficiencies. Lyme causes dificiencies too, but my levels should have been going up after months and months of suppliments.

The long and short of it is I ate no wheat at all for a few months and I feel so much better and my iron level is now normal. I eat no wheat most of the time, just some when traveling if I have few food options.

I'm 18 months into the new diet and feel I have made the most progress against lyme during this period. That little tummy pouch thing went away too!
Mel


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jbgoth
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Lyddie,

I hope your daughter feels better soon.

I wonder how long it takes to get over an allergic reaction?

I had some more kefir today. This time i took Lactase with it. It really helped. Im not sure if its such a good idea to do that though. Somehow, i have to replenish my good flora.

I am on the same diet you wrote about. However, i stay away from rice cakes and potatoes because they convert to sugar very fast. Also, cashews are not good to eat because of the mold. Almonds are much better.

How do you suggest finding out what you are allergic to besides a blood test? I know they can do skin tests.

I tried NAET treatments, but it didnt do too much for me.

Have you checked your daughters Ph? I guess if you are more alkaline its harder for the yeast to live. At least, thats what i have been told.

Im working with a candida treatment center in Florida. Im already using L-Glutamine plus several other supplements.

I have been off ABX for almost 10 months. I have been trying to heal my gut and kill the candida since then. I have used all kinds of natural products. I also have been taking diflucan off and on for about a year. I was put on Vfend and i have used Nizoral. I dont like using the prescription anti-fungals because they are so hard on the liver.

Blessings,

Jordan

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