Friday, April 2, 2010


A very sick Lyme, a middle age male with: Babesia/ neuroborreliosis/abnormal SPECT scan is now feeling normal off antibiotics after 2 years of treatment. He also has "gluten sensitvity." Two children and a sister have celiac disease. He has tested negative for celiac. His TtG Iga is negative (supposedly an accurate screening test). Two gastric biopsies, the "gold standard" for celiac were negative. Nonetheless, tiny amounts of gluten cause symptoms: pains, fatigue, rash, neuropathy, and gastrointestinal symptoms, including GERD. Gluten free diets are difficult. Food advertised as gluten free may contain trace amounts of gluten and rapidly set off symptoms. Conclusion: gluten sensitivity exists along a continuum. Standard tests only reveal gross disease with macroscopic loss of intestinal villae. Other patients may have ultra-microscpic changes, not observed with standard tests. In predisposed individuals, gluten causes extreme immune reactivity. These symptoms must be teased out from those of Lyme


Brooke said...

Do you often recommend that patients who aren't improving try a gluten free diet? I've considered it, but it's an all-in kind of thing.

Nancy said...

Has the rash he gets been biopsied? Might it be dermatitis herpetiformis--the skin manifestation of gluten sensitivity? My mother had DH diagnosed after having years of intestinal first it didn't show up in the GI tract, but later biopsies were positive.

John said...

For those of us allergic to legumes, no gluten is not really an option. The substitutes available out there almost all are bean based that I have seen. Then there is the expense of gluten free. Every non standard food costs 10 times as much as the others. For those of us that cant or can barely work, that isn't an option either. Does gluten free really help or just lessen the symptoms?

Seibertneurolyme said...

Here is a link to a urine test that can help detect a gluten intolerance.

Also a link to a case study on someone with severe celiac and brain/neuro manifestations -- if bad enough celiac can cause white matter lesions as seen on MRI's.

John -- rice is ok on a gluten free diet. And new research seems to indicate that oats are also ok. Avoid wheat barley and rye.

Bea Seibert

Jack said...

Gluten-free is not as hard as it sounds. I've read that wheat, rye and barley are OUT, and oats are also out unless certified 'gluten free' -- however in processing, oats are sometimes contaminated by other gluten-containing products, even if labeled gluten-free. Depends on your tolerance, I suppose.

Corn, potatoes and rice are okay. I find I spend LESS money on this diet than I did before, because it's not a lot of pricey prepared foods.

I cook simple meals from simple ingredients, and it's cheap and nutritious: Eggs, fish, vegetables, fruits and corn/rice/potatoes. I also go out with friends, and it's not as hard as you'd think to find something on the menu that I can eat.

Try it for a while, with a fixed end date to the effort, and see if you feel better at that point in time. If not, then maybe it's not gluten that's bothering you. I'd give it a couple of months to give your system a chance to heal, but I'm not a dr or dietitian so don't know how long that would take. Maybe someone else can comment.

EyeBob said...

One would also conclude that perhaps the human body, in it's many, many reactions to various foodstuffs is in a constant flux. I personally am very, very skeptacle when anyone lists that certain things "set them off." I would assume that the human body has lots of ways to deal with a hypersensitivity (i.e. immune over-reaction) and that it can be influenced by the statet that the body is in at the time of the event. Otherwise, every time you injested something that "set you off" would produce EXACTLY the same reaction, which I surmise it doesn't. The human body is just way too complicated to rule in or rule out just one thing. Not saying that one cannot be "sensitive" to gluten. You can. Just wondering why there would be a continium if it were purely because of one thing (gluten).

MJ said...

"An increase in the ratio of tryptophan to phenylalanine and leucine will increase serotonin levels. Fruits with a good ratio include dates, papaya and banana. Foods with a lower ratio inhibit the production of serotonin. These include whole wheat and rye bread.[13] Research also suggests that eating a diet rich in whole grain carbohydrates and low in protein will increase serotonin by secreting insulin, which helps in amino acid competition.[14] However, increasing insulin for a long period may trigger the onset of insulin resistance, obesity, type 2 diabetes, and lower serotonin levels. Muscles use many of the amino acids except tryptophan, allowing men to have more serotonin than women.[15] Myo-inositol, a carbocyclic polyol present in many foods, is known to play a role in serotonin modulation.[16]"

Bea K said...

I found out I was gluten intolerant way before I was diagnosed with Lyme. I was so miserable that going gluten-free was like a walk in the park. Eating gluten-free is second nature now. It's been over 5 years.

My blood test for Celaic was negative so my doc said, "No way". I had a hunch so I went off all gluten on my own and had great results. That's all the proof I needed.

I may have had Lyme before I knew about the gluten intolerance. My LLMD seems to think I've had it for many years undiagnosed.

In response to Eye-Bob - I absolutely know when I have accidently ingested gluten - usually after eating out. It is always the same symptoms which I will politely not list here. I avoid eating out very often. I bring my own food as a house guest.

Like the patient who was mentioned, minute amounts of gluten will make me ill. I have my own toaster and pans at home. Simple whole foods are the way to go. Vegetables, meats and fruits and alternate grains are easy enough to cook and eat.

Is it easy to try to live gluten-free? No. Is it worth it? Yes!

T. said...

I always wonder if low melanocyte stimulating horomone (MSH) might play a part. I know of a number of Lyme folks with gluten intolerance who also have low MSH.

Correlation is not causation, but there are some intriguing articles in the medical literature on this.

For example:

Anti-Inflammatory Effects of -Melanocyte-Stimulating Hormone in Celiac Intestinal Mucosa
Colomboa et al
Neuroimmunomodulation 2002/2003; 10:208-216

Colomboa et al found that MSH has an anti-inflammatory effect in celiac mucosa (which is the inside lining of the intestinal tract that absorbs food into the body).

Dave said...

This sounds a lot like me. I had no gluten or dairy issues until after a couple of years of antibiotic treatment. Then last year I realized gluten and dairy were causing great inflammation in my body.

Now that I am off these, the inflammation has noticeably subsided but my neurological sx have not (yet) improved.

It seems that now that the inflammation is resolving, supplements and medications are working in a more "normal" manner and my body is undergoing a great chemical change.

Leslie said...

I think it's awesome that you look at all aspects of things that could cause problems. Gluten is a major problem for some people and can definitely cause the immune response as in RA. Thank you for considering other causes of problems.

PTmom said...

Dave: Columbia is looking at trying to find out how to discern active Lyme from post Lyme inflammation. I'm wondering about low dose natrexone for the inflammation. The only downside I wonder about is a study from Finland that showed that anti-TNF drugs activated latent spirochetes. I think LDN is indirectly anti-TNF so maybe it should be used while one is still on antibiotics. LDN is also looking promising for treating Crohns. Anyone have any input on that idea?

John said...

I'm seeing a trend in treatments for a number of long studied, so called, autoimmune diseases that are receiving some success with antibiotics where immune suppression has failed. This leads me to the idea that autoimmune doesn't exist. It is really caused by a heretofore unknown pathogen. If we stop treating symptoms and started treating the cause, people just might get well. I know that there is no money to be made with healthy people so it just isn't going to happen. No gluten diet is treating a symptom thereby masking the disease. The same with many of these other treatments that mask the symptoms but do NOT address the cause. It is okay to give symptom relief as long as the cause is being addressed. The symptoms are often our only clue to treatment/disease progression.


John, never agreed more with someone in this topics. Even the palpitations are indications to me; maybe the treatment is too strong, or the opposite not enough. Each symptoms has a cause. As Dr. "J" states here, most of these symptoms improve after long term treatment with antibiotics, antiparasitics, and dewormers. Medicine has to look at the cause to take care of the symptom if not is just a masquerade; or a torture?


Hy did you read the panel recommended NOT TO REVIEW THE GUIDELINES FROM IDSA??? What a shame!
Hee is the story:,0,5888015,comment-display-all.story

James said...

LymeMD: I did a search on KPU or HPU and did not find anything on your blog as of yet. Have you checked out Dr. Klinghardt's theory on Kryptopyrroluria that over 08% of Lyme patients have this illness that can be controlled with zinc/b6/manganese/Etc?

GH said...

This has nothing to do with the subject... or very little. I wanted to ask the dr what he thinks of administering gingko biloba medical extracts (vitalogink) to improve perfusion of antibiotics in tissues with low vascularisation.

My current dr seems to prefer this and in spite of my symptoms deteriorating fast over 3 weeks he still maintains they are Herx reactions.

GH said...

Is there a possible link between a chlamydia species infection and gluten intolerance? I found an article on pubmed on nutrients needed for chlamydial growth
Antimicrob Agents Chemother. 1999 Sep;43(9):2311-3.
Antimicrobial susceptibility testing of Chlamydia trachomatis using a reverse transcriptase PCR-based method.

Cross NA, Kellock DJ, Kinghorn GR, Taraktchoglou M, Bataki E, Oxley KM, Hawkey PM, Eley A.

Division of Molecular and Genetic Medicine, University of Sheffield Medical School, Sheffield S10 2RX, United Kingdom.

The conventional method for antimicrobial susceptibility testing of Chlamydia trachomatis is subjective and potentially misleading. We have developed a reverse transcriptase PCR (RT-PCR)-based method which is more sensitive and less subjective than the conventional method. Using 16 strains of C. trachomatis in triplicate assays, we found the RT-PCR method consistently more sensitive than the conventional technique for all eight antimicrobials tested, with resultant MICs determined by RT-PCR ranging from 1.6-fold higher (erythromycin) to >/=195-fold higher (amoxicillin).

PMID: 10471587 [PubMed - indexed for MEDLINE]PMCID: PMC89469Free PMC Article

Jupiter said...

Dr Rau recommends that most of his immune-compromised patients stay off wheat and dairy until healthy. To ensure all the essential amino acids, he recommends a grain product (Eveliza). He also said at a recent talk that borrelia has similar symptoms to syphilis. With changing times and environment, the virus may have changed too. (Not much syphilis in modern times, and Lyme was only discovered about 35 years ago.)

Barry said...

How does gluten affect you? I mean what does it do to make you feel bad?

sicklywoodmancraig said...

Just a follow up for the doctor. I am not sure that anyone ever reports back their health status after no longer needing the invaluable service of their physician so here I am. I was the very sick middle aged male with Babesia/neuroborreliosis/abnormal SPECT scan. I take great pride in saying "WAS". As you can see it is more than a year since I last met with the doctor. I went Gluten Free at the advice of LymeMD who I told I could never do it unless he told me I had to. You see, gluten free is a life altering event and almost immediately I noticed the benefits to my health.

In hind sight I have examined my medical needs over a 45 year period and discovered many issues directly related to Celiac Disease, somewhat easier to do in hind sight. I believe Lyme is opportunistic and face it, if you have an undiagnosed autoimmune disease there is little or no chance of getting better without addressing the underlying disease. Based on my family history, my symptoms, including dermatitis herpetiformis, LymeMD recommended going gluten free. I did have Lyme but I believe it was going to take forever to get better, however once the Celiac Disease was addressed healing from Lyme was amazingly fast.

I am writing this because I read Lyme sites daily and see a lot of people that appear to have underlying issues which prevent them from ever getting better regarding Lyme. I am one of the lucky few that have gotten better.

Thanks DOC and Happy Fathers Day, even if you aren't a father, you have made this father happy to be alive.