I've been on a Gluten free diet for 2 weeks and don't feel a difference. Anyone else have this and/or can distinguish the symptoms from Lyme?

My LLMD was dismissive & felt Lyme is the underlying cause of my symptoms. He said that Lyme is so fricken resilient that it makes you wonder if other things are contributing to your symptoms when after all, it's just the stubborn nature of chronic Lyme.
 

Pomegranite
 

[This message has been edited by Lynn Lymemom (edited 24 July 2004).]
 

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Originally posted by Lynn Lymemom:
Check what specific labs tests your doc did. There are several tests to test for Celiac. Some are more specific than others. Even then you can have false positives.... sound familiar!?!??!!? A scope gives you a more difinitive diagnosis.

Doing a search on the net for Celiac can answer a lot of your questions.

LLMD did two tests (the least reliable) which one came back positive. We went to her Gastroenterologist who did the most specific one, which came back clearly negative. She also tried the gluten free diet which didn't help her either.

I understand some of your frustration. While I didn't want my daughter to have another diagnosis... let alone one so hard to manage (dietary).... IF it only would help her feel better... along with her lyme diseas.... we would to it!!!!!!! But even though she's neg. for Celiac, it's a mixed blessing.......

Been there.... done all this,too.............................

Lynn LM

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[This message has been edited by Lynn Lymemom (edited 24 July 2004).]
 

His only very bad symptom was a diarrhea wh�ch lasted for three months. After starting the gluten free diet the diarrhea stopped within one week and didn't come back.

Also, they found that he had the beginning of osteoporosis. Also this resolved with the diet.

Only seven years later we found out that he had Lyme. Our LLMD says Lyme causes Celiac Disease. In fact, this were his first words when we told him about the Celiac Disease: "When you have Celiac Disease then you also have Lyme".

He doesn't have fatigue and foggy head but he has trouble finding words and forgetting things. Nothing changed here with the diet. I think this is Lyme and not CD.

Gabrielle

Let me be exact here--some patients with lyme have lowered antibody production--due to dealing with the neurotoxins produced by B.B--Henceforth, immune supression due to lyme

Usually, once the disease is under control--the immune system returns to normal parameters--this also requires a certain amount of detoxxing to accomplish( if it was truly that easy...IMO)

But certain people who do not produce enough of the antibody class IgG( most abundant form of antibodies)---known commonly as IgG subclass deficiency-or hypogammaglobulinemia, may have Celiac disease as the underlying condition causing the subclass levels to be low.

Most allergists are aware of this, not all LLMDS' are (per Celiac and immune deficiencys)

I was told the biopsy is the gold standard for testing--that the serum testing is not that acurate, nor is syptomology always *telling*-- many patients do not present with typical case features. So a clinical DX could miss some cases--the biopsy will not--I believe
 

So I continued the gluten free diet, and I gained about 12 pounds, and my symptoms decreased for another month; but, my lower abdominal pain and other digestive symptoms started coming back again. Slowly throughout the rest of 2003 my digestion, along with the rest of my health; continued to deteriorate to the point where my bowels produced the worst burning, painful gas of my life. And I lost all of the weight that I had gained during the middle of the year. I thought all along that this was a result of unresponsive Celiac-Sprue; i.e., I thought that my body was not responding/healing even with the gluten-free diet.

It was then that I decided to see a G.I. specialist. I first met with him this past February. He agreed to do a small bowel biopsy to check for Celiac-Sprue. Two weeks later, after going into my stomach, the G.I. specialist found 2 small stomach ulcers, and the small bowel biopsy came back NEGATIVE: no Celiac-Sprue.

So my problems continued to be a mystery; until I went to see my naturopathic doctor. He had me tested by Bowen 2 weeks later for lyme.
I also had IgG and IgE allergy blood tests, which surprisingly came back negative for both gluten and dairy; but positive for eggs, yeast, and bananas. (So maybe I was not reacting to the gluten so much as I was to the yeast in the bread.)
Once the Bowen test confirmed that I had lyme (which was a total mystery to me!), and I started my antibiotic treatments, here I am today (5 months later). My digestion has improved significantly since starting the antibiotics; but, the antibiotics are causing its share of G.I. symptoms too. Overall my digestion is continuing to slowly improve (Due also to the plant based digestive enzymes that I take with each meal). I am hoping that once I get back close to normal, that I will be able to eat gluten again; but until then, I am not taking any chances, and am staying away from the gluten; especially while taking antibiotics.

DMC
 

Celiac Disease is an auto immune disease that is inherited.
Not all family members present with Celiac Disease. Only those whose gene that marks for it is activated, usually by severe stress, a heavy viral or bacterial infection or physical trauma. In short, anything that can throw the body into some form of shock.

Once activated, the immune system will create antibodies against the tissues lining the small intestine, thus destroying the small hairlike structures whose function is to absorb nutrients.

This interruption in proper nutrient absorbtion and digestion is what leads to symptoms.

Now for the curious piece....There are two predominant theories as to how the immune system destroys the tissues lining the small intestine. The theory which is most interesting for lyme patients is as follows...

NK cells are created by the immune system to destroy the lining of the small intestine in Celiac Disease.

Lyme patients are known to have supressed NK cell production.

Hence, a lyme patient who also has celiac disease may not test positive via the small intestine biopsy..there may not be sprue developing as their NK cell production is limited by the lyme disease.

Now all the other questions pop up....SO, if my NK cell production is low, but my body is producing anti gliadin antibodies ( one of the findings on blood work for celiac disease), how is my nutrient absorbtion being altered, or is it being altered at all? Am I absorbing my oral antibiotics properly (which are also primarily absorbed in the small intestine)? It gets pretty complicated.

Celiac Disease is deeply misunderstood in this country, many thinking it is a food allergy. It is not. It is an hereditary genetic disorder which presents as an autoimmune response to the small intestine.

Blood work testing for Celiac Disease is inadequate, but certainly helpful.

The NIH held a conference in June to bring together celiac disease specialists to determine the prevalence in the US population and the best testing and treatment guidelines for the future. We'll have to wait to see what they come up with.

Celiac has been widely recognized in Europe for generations. Since many of us in the US are historically from European stock, it is silly to assume that we do not also have Celiac Disease in the US.

We are in the infant stage in the US in understanding and testing for celiac. It simply isn't taught at medical school as it should be.

If you suspect celiac disease, find a gastroenterologist who specialized in Celiac in order to get the proper diagnostic and educational approach to your problems.
One can easily be asymptomatic for celiac yet be in the process of destroying one's small intestine.

You can find support groups in your area for a GI doc referral on several of the celiac disease websites...
http://www.celiac.org http://www.celiac.com http://www.nih.gov

The good news is that it is reversible with a completely gluten free diet. Gluten in wheat, barley and rye trigger the autoimmune response. This is not simply an allergy, it is an autoimmune disease. Benadryl will not reverse the body's reaction to gluten. Even tiny amounts of gluten in the diet, say from a bit of soy sauce on an egg roll, can trigger an autoimmune response that takes months to reverse. Gluten is found in many, many foods that one would never suspect unless educated about it.

My Biopsy was also negative for sprue, but my antigliadin antibodies are off the charts and my mother has Celiac Sprue and symptomatic disease....My NK cell counts are extremely low due to lyme.

I spoke with the head of the peidatric celiac disease unit at UCLA in June at a conference. She said that it makes sense to her that sprue might not be present or plentiful if NK cell levels are diminished. She was fascinated at the connections between lyme disease and celiac disease. So, I put her in touch with my LLMD and ILADS.

I'm still waiting to hear what we should do next.

I too had a gastric ulcer...but I was also on high doses of doxy for months before the biopsy, and doxy is extremely caustic to the GI tract.

Now you have more facts than you probably wanted.
Celiac is not a simple disease, but the treatment is effective....No gluten, the sprue heals, the body can normalize.

The flour is from Brazil and is made from mantioc (tapioca). If you add a handfull of gluten free cheese, it makes killer cheese bread rolls...and makes a good pizza crust that you can freeze to use when you please. My kids, who are not celiac positive, eat the cheese rolls like crazy. I have to protect my personal supply!
 

Being on a gluten free diet for only two weeks is not long enough to feel symptoms change usually. It takes months to reverse early disease...years for later stage disease.

The small intestine is damaged, nutrients aren't being absorbed properly. It takes time to end the auto immune response from your body and then to begin the healing process of the small intestine. Only after healing has happened will most or all symptoms be reversed.

There can be gradual improvement of symptoms, certainly, but to expect a response this early is not realistic. I'm so sorry.

Also, avoiding all of the "hidden" gluten sources in your diet is a tough job unless you have a dietician who specializes in gluten free diets to support you. Even the smallest amounts of gluten can trigger the auto immune reaction again and reverse some of your progress.

Attending one of the gluten free cooking conferences is a HUGE help in learning new ways to eat, what to avoid, etc. I went to one in June and felt 100% more prepared than before I attended...and I thought I was doing pretty good before hand.
 

Thank you so much for the valuable info on Celiac-Sprue. I was wondering if you might have an explanation for my situation.
My biopsy was also negative for sprue, but my antigliadin antibodies were very small (I think around 23, slightly above normal limits). Do you think that this is because I had eliminated the gluten from my diet 10 days before I was tested, or is it because of low NK production?

DMC
 

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Originally posted by Lymelighter:
My antigliadin abs were also low and I had a big bowl of Wheaties before the test.

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Some people with Celiac disease have no symptoms for a long time, while damage is being done to the body.

DMC
 

However, it shouldn't have an effect of the biopsy as the healing of the small intestine takes longer than ten days.

There is all sorts of controversy over how strong an indicator the blood tests can be. The antigliadin antibodies are an indicator of some sort of autoimmue response, but it's more complex than that in the big picture.

Just how the various tests should be interpreted is a topic of great conflict. That's one reason for the NIH study group in June. I haven't read the upshot of the conference yet....I don't know if it's available yet.

My GI doc said that if the biopsy is negative, but the blood work is positive, celiac disease should be considered to be present, that the patient should go on the gluten free diet to avoid small intestine damage, with the resulting nutritional imbalances, and following system and organ damage.

I find it hard to make that shift to the gluten free way of life without stronger consensus on what the blood work actually means. It's a huge shift in how one lives and eats and I'm too much of a baby to make it without some other supporting evidence....denial is more than just a river in Egypt, eh?
 

It is true that special gluten free products like bread or noodles are very expensive. The diet itself, however, is not difficult, once you have accepted that there will be no more convenience food for you.

We had never eaten so good in our lives as from the day onward when we started to cook gluten free. As restaurant visits are also very difficult, we learnt to cook all our favourite specialties from all around the world. It was a wonderful time.

Then came Lyme treatment and with it the antiyeast diet. Now that's what I call restrictive! Now, our culinaric life is very dull.

Gabrielle

I discovered and use a great place for products called the glutenfreemall.com Some of the companies they carry products for are: Ancient Harvest Quinoa , Authentic Foods , 'Cause You're Special , Chebe Bread Mix Dietary Specialties , Dowd and Rogers Enjoy Life Foods Glutano / Barkat Instant Gourmet , Mr. Spice , Mrs. May's Natural, Nu-World Amaranth , Pastato / Pastariso Shiloh Farms,

There are chocolate brownies that put the regular ones to shame...wooohooo.

How long does it take to see some improvement. I was on the diet for months and months (6 to 8 months)and finally gave up. I did not find the diet that difficult, but I changed to a sugar free diet as I had heard that was a requirement for lyme treatment.

Now I don't mind following a particular food plan on the road to good health, but this is getting ridiculous. No yeast, no sugar, no preservatives, no artificial sweetners, no dairy, (IBS) so salads are a big no-no......

I might as well go on the "food free diet" No wonder my blood levels of protein are always low. How much boiled chicken breast can a person eat?

I am really running out of options on what to eat and the hubby is getting very frustrated with me, and lately he has been buying and flauting the doughnuts, candy, etc for me to see. He doesn't believe that diet has anything to do with any illnesses and considers his daily regiment of beer to be the key in his great health.

I printed out this thread to refer back to, with the excellent info. Any hints would be greatly appreciated.

Laney

[This message has been edited by lymielu (edited 27 July 2004).]
 

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Originally posted by breathwork:
Being on a gluten free diet prior to the blood work can change the outcome of the tests. That's why they ask you not to start it until after blood work is done.

However, it shouldn't have an effect of the biopsy as the healing of the small intestine takes longer than ten days.

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Breathwork,

The test I sent to Enterolabs was not a blood test, but a stool test. Below are my results:

"Gluten Sensitivity Stool Test
Fecal Antigliadin IgA 23 Units (Normal Range <10 Units*)

Stool Test for Autoimmune Reaction to Tissue Transglutaminase
Fecal Antitissue Transglutaminase IgA 15 Units (Normal Range <10 Units)

Stool Test for Small Intestinal Malabsorption
Microscopic Fecal Fat Score: 38 Units (Normal Range < 300 Units)

Stool Test for Milk Sensitivity
Fecal anti-casein IgA antibody 19 Units (Normal Range <10 Units)

Gene Test for Gluten Sensitivity
Molecular analysis: HLA-DQB1*0201, 0602

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

Interpretation: Analysis of this stool sample indicates you have dietary
gluten sensitivity, resulting in an associated autoimmune reaction to the
human enzyme tissue transglutaminase, but no small intestinal
malabsorption/damage. You also have antibodies to the main cow's milk
protein, casein, and hence, you are immunologically sensitive to foods
containing cow's milk.

HLA gene analysis reveals that you have the main gene that predisposes to
gluten sensitivity and celiac sprue (HLA-DQ2). This genotype also can
predispose to microscopic colitis and other autoimmune syndromes."

The man who did the testing is Dr. Kenneth Fine. He says that the stool test is more accurate than the blood test.

I did not have the biopsy done until 6 months after the stool test.
6 months later, when I had the small bowel biopsy done, it came back negative for Sprue.

Also, I had some allergy tests done, and the IgG and IgE blood results showed no reaction to gluten. Is this the correct blood test for checking gluten sensitivity?

During the 6 months prior to the biopsy and allergy testing, I followed a strict gluten-free diet.

DMC

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Originally posted by Lymelighter:
Hiker what are your neuro symptoms. I'm really puzzled by this as my lastest gluten test was normal.

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I have lots of disequilibrium and imbalance(ataxia). I have become uncoordinated and clumsy. I also started getting myoclonus (muscle jerks). I get high ear pressure, too. Celiac can cause some of these symptoms and my mom has the disease, but her symptoms are digestive. My blood tests were normal, but I have the gene for it. The small intestine villi were normal, but there were too many white blood cells there. A stool culture done at Enterolab showed antibodies against gluten. I highly recommend Dr.Joe Murray at Mayo Clinic. He is the gastroenterologist that told me to go on the gluten free diet. I have not found it a hard diet to stay on. Just be careful at restaurants.