Ok now I'm thinking gluten intolerance, anyone have?

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springsjean
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Date Joined Mar 2009
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   Posted 2/9/2010 2:13 PM (GMT -6)   
I thought I figured out it was sugar, so started eating healthy and feeling good and then whammo, could it be all the "healthy" wheat products I bought.  I go on Monday to dr. so gonna ask to be tested for insulin resistance or reactive hypoglycemia cause it is definitely what I am eating (besides the lyme) triggering the anxiety and heart palps.  Wondering if anyone here with lyme also gluten intolerant? 

need some zs
Regular Member


Date Joined Nov 2006
Total Posts : 143
   Posted 2/9/2010 2:33 PM (GMT -6)   
I would suggest a full food sensitivity panel rather than just gluten -- I did one a few years ago, and I had sensitivities to almonds and a few other foods that I would have never guessed. Even if they don't cause direct issues, they can exacerbate any conditions (like Lyme) and can make it harder to recover.

Good luck.

therearemiracles
Veteran Member


Date Joined Dec 2006
Total Posts : 3455
   Posted 2/9/2010 3:11 PM (GMT -6)   
for years I thought it was gluten, finally tested positive for yeast! There's a difference. Maybe just get rice bread and see if that works. Toasting it always makes it taste the best.
Very mild left sided (could have fooled me with the "mild")  UC.Just found out 4 years into it I might have Lyme's Disease, going to a LLMD in December. Confirmed Lymes on 12/8/09 before my new antibiotic protocal from my LLMD, I  Started and stopped LDN ON 1/25/09 to mid May no improvements. Tried Asacol, Pentesa, Colozol, Sulfasulsadine and Lialda, they made me worse. A range of antibiotics, not much better. Supplements: Threelac, multi, iron, very low yeast/sugar/wheat  No UC meds at this time. Started Doxy and Cedfinir too rough on stomach, started Bicillin injection 1/12/10, once a week of injections. Feel much more energy on shot.


nasalady
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Date Joined Sep 2009
Total Posts : 1176
   Posted 2/9/2010 3:25 PM (GMT -6)   
springsjean said...
I thought I figured out it was sugar, so started eating healthy and feeling good and then whammo, could it be all the "healthy" wheat products I bought. I go on Monday to dr. so gonna ask to be tested for insulin resistance or reactive hypoglycemia cause it is definitely what I am eating (besides the lyme) triggering the anxiety and heart palps. Wondering if anyone here with lyme also gluten intolerant?


I have celiac disease and have probably had it since childhood, but I know that Lyme disease can mimic celiac disease and cause gluten intolerance. It can also trigger autoimmune disease, including celiac disease I would assume....? It's very common for people with Lyme to be gluten intolerant.

The other thing you should keep in mind is that you DON'T want to be feeding the bacteria, so you need to keep the carb intake low. Eating lots of wheat (or any grain) is not good because of the carbs.
Lyme Disease, AIH, Hashimoto's, "lupus-like" CTD?, fibro, RA, celiac disease, asthma, psoriasis, Raynaud's, hypertension, osteopenia, sleep apnea, RLS, GERD, degenerative disc disease, cubital tunnel, tarsal tunnel, Doxycycline, Prednisone, Imuran, Plaquenil, Lyrica, Cymbalta, Levothyroxine, Atenolol, Cozaar, Zyrtec, Fosamax, Albuterol, Prilosec, CPAP, Darvon, Morphine Sulfate

autoimmunediseasesgfliving.blogspot.com

Post Edited (nasalady) : 2/9/2010 2:35:13 PM (GMT-7)


Razzle
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Date Joined Aug 2007
Total Posts : 4396
   Posted 2/9/2010 4:32 PM (GMT -6)   
Yes, I have gluten sensitivity plus a gene for Celiac (I believe if I hadn't gone gluten-free when I did, that I would have eventually gotten full-blown Celiac). I also believe Lyme can turn "on" the genes for various autoimmune conditions.

EnteroLab.com is a great lab for testing for gluten intolerance/sensitivity (I have no financial interest in this company or website).

Also, the Celiac blood tests should include the following:

Total IgA
Anti-Tissuetransglutaminase IgA
Anti-Gliadin IgA
Anti-Gliadin IgG (if this is positive w/o positive IgA, then either one is IgA deficient or one has Gluten Sensitivity)

And always request a copy of your lab test results - often, MD's don't tell you everything about your results, or they ignore abnormal results they either don't consider significant or don't understand the significance of.

Ultimately, the Gold Standard for any food intolerance/allergy/sensitivity is a food trial in which one avoids the food and all related foods (i.e., not just wheat, but also rye, barley, oats and all products derived from these grains) for at least 4 months (gluten takes 6 weeks to leave bowel tissue; it takes an additional 6-8 weeks for the damaged bowel tissue to heal). And then a challenge can be done, optionally...my challenge after 6 months gluten-free was one tiny communion wafer. I knew right away that gluten was a big no-no for me after that.

Good luck,
-Razzle
Chronic Lyme Disease, Chronic Bartonella (clinical dx only), Gluten & Sulfite Sensitivity, Many Food/Inhalant/Medication/Chemical Allergies & Intolerances, Asthma, Gut issues (dysmotility, non-specific inflammation), UCTD ("Secondary Lupus-Like Syndrome"), Osteoporosis, chronic Lymphopenia, etc.; G-Tube; Currently weaning off TPN.
Meds:  Pulmicort, IV Doxycycline, Heparin (to flush PICC line), Claritin, Singulair, Domperidone, Colloidal Silver (topically & nasally), probiotics, Liver support herbs, Ailanthus, digestive enzymes, homeopathy.


yogamom2
Regular Member


Date Joined Nov 2009
Total Posts : 99
   Posted 2/9/2010 4:44 PM (GMT -6)   
Hi, My husband and kids have LD and all have tested positive for celiac disease(gluten intolerant). I did not test positive for celiac disease but I found out that if you are not eating gluten products when you get tested it can be a false negative. My doctor took me off gluten to keep down the inflammation in my body. I have noticed that when I eat gluten I feel bloated. If I stay away from it I feel better.
My family and I have been enjoying my life without surgar dairy gluten and soy for many years.

Found out about it in spring of 2009 that I have been living with Lyme for over 8 years. My symptoms of Lyme have been Mini-Strokes/TIA's, Hashimoto's disease, swelling of my liver and kidneys. Anaphylactic reactions to raw apples, raw carrots, and Beef. Allergies to dairy, gluten, and Soy.


Gizmo10
New Member


Date Joined Jun 2009
Total Posts : 15
   Posted 2/11/2010 9:11 PM (GMT -6)   
See I am going to get tested for this... I swear I have food allergies..
One problem with Gluten...
I run a bakery! ha! I m a sugar ad carb addict.. and I'm sure it's nt good! Although I do know a lot about glten free product and sell a ton of it.. so i have found a few items that are tasty.

springsjean
Forum Moderator


Date Joined Mar 2009
Total Posts : 2154
   Posted 2/11/2010 9:20 PM (GMT -6)   
Wow thanks so much for all the tips and advice. Wondering what everyone's symptoms with gluten and/or yeast were? GI, typical yeast infection symptoms or no???

bucci
Veteran Member


Date Joined May 2006
Total Posts : 1477
   Posted 2/11/2010 10:01 PM (GMT -6)   
WHAT !!!!!THERE IS GLUTEN IN THE COMMUNION WAFFERS????

OH MY GOD !!!

now they will have to have the alchohol free wine line and the gluetnen free wafer line!!

what kind of food alergy tests are you guys doing?
hep c , lyme
Dad has lyme


Razzle
Veteran Member


Date Joined Aug 2007
Total Posts : 4396
   Posted 2/11/2010 11:09 PM (GMT -6)   
The symptoms I had that disappeared with a gluten free diet were a feeling of heaviness after eating, and horrendous migraines & cramps with each monthly cycle. After I went gluten-free for 6 months, the challenge dose of gluten (the communion wafer) triggered 2 days of diarrhea in addition to the above. And it took 6 weeks for the monthly cycle symptoms to go away. Every time I'm "glutened" (including if I inhale gluten like if I walk by the bakery in the grocery store, or if I go up the bread aisle in the store, or visit someone's house where wheat pasta has recently been cooked), I pay for it for 6 weeks' worth of monthly cycles.

Food allergy tests I've had:

Electro-Dermal Screening (EDS)
NAET (muscle testing)
IgE blood tests (RAST)
IgG blood tests
IgA stool tests for gluten, yeast & casein
Skin prick testing
Skin patch testing
Trial and error (i.e., avoidance & re-challenge)

EDS says I'm allergic to most all foods. I believe it, most foods give me some kind of discomfort.

NAET says I'm allergic to many foods.

IgE blood tests say I have no food allergies.

IgG blood tests say I have about 25 food allergies.

IgA stool tests say I have an immune response to gluten, casein and yeast (probably would show reactions to more foods if such tests existed)

Skin prick tests say I'm allergic to soy, eggs, fish, tomatoes, corn, rice, and tree nuts.

Skin patch testing says I'm allergic to beef, turkey and chicken.

Trial and error agrees with EDS and tells me I have trouble with most foods, most sources of water, and 2 preservatives (Sulfites, TBHQ).

Take care,
-Razzle
Chronic Lyme Disease, Chronic Bartonella (clinical dx only), Gluten & Sulfite Sensitivity, Many Food/Inhalant/Medication/Chemical Allergies & Intolerances, Asthma, Gut issues (dysmotility, non-specific inflammation), UCTD ("Secondary Lupus-Like Syndrome"), Osteoporosis, chronic Lymphopenia, etc.; G-Tube; Currently weaning off TPN.
Meds:  Pulmicort, IV Doxycycline, Heparin (to flush PICC line), Claritin, Singulair, Domperidone, Colloidal Silver (topically & nasally), probiotics, Liver support herbs, Ailanthus, digestive enzymes, homeopathy.


Razzle
Veteran Member


Date Joined Aug 2007
Total Posts : 4396
   Posted 2/11/2010 11:13 PM (GMT -6)   
Yes, most standard communion wafers contain gluten. Some are made from egg whites. There are just starting to become available some rice-based communion wafers, but I don't know where to obtain them. My Husband and I use a small potato chip and a sip of water if we take communion (we bring our own from home).
-Razzle
Chronic Lyme Disease, Chronic Bartonella (clinical dx only), Gluten & Sulfite Sensitivity, Many Food/Inhalant/Medication/Chemical Allergies & Intolerances, Asthma, Gut issues (dysmotility, non-specific inflammation), UCTD ("Secondary Lupus-Like Syndrome"), Osteoporosis, chronic Lymphopenia, etc.; G-Tube; Currently weaning off TPN.
Meds:  Pulmicort, IV Doxycycline, Heparin (to flush PICC line), Claritin, Singulair, Domperidone, Colloidal Silver (topically & nasally), probiotics, Liver support herbs, Ailanthus, digestive enzymes, homeopathy.


pepphell
Regular Member


Date Joined Jan 2010
Total Posts : 134
   Posted 2/15/2010 7:18 PM (GMT -6)   
Razzle, you seem to be very knowledgeable. I have got real questions for you or for anyone else who feel obliged to answer:

a) Is it possible that one have gluten intolerance, but they continue to eat it without any effect. (for example, i've eaten gluten all my life without feeling anything, doesn't make sense lyme has made me gluten insensitive).

b) if you give up gluten, what's left there to eat? (given that you also have allergies to soy/eggs etc)

c) my doctor thinks i've have candida, but what can i do to get rid of it? can low intake of gluten be helpful if gluten can't be eliminated at all?

d) Celiac disease, i hear is harmless so can we all live with it forever?

Post Edited (pepphell) : 2/15/2010 6:24:30 PM (GMT-7)


Korissa
Regular Member


Date Joined Oct 2006
Total Posts : 343
   Posted 2/15/2010 9:12 PM (GMT -6)   
Did anyone have the stool test for gluten intolerance? My LLMD did one and I have a gene from each of my parents for gluten sensitivity. I don't have celiac. A nutritionist I know who is better than a doctor said if enzymes are taken before eating gluten it's ok, but LLMD says not true, so I'll do as she says while under treatment for bart.

For two weeks I've been back on gluten free diet. My muscle tone has gone to mush and evidently if you're eating gluten, the lining of your digestive tract is irritated and can't utilize the protein from food to build muscle.

I'm hoping that when I get finished with abx, I can get back to eating bread. There's just no gluten free bread that doesn't have the texture of pressed sawdust! So I just don't eat any bread.

I never considered the communion wafer. Maybe I'm going to have to skip it for a while??? If I hadn't read this, I would have taken it without thinking.

nasalady
Veteran Member


Date Joined Sep 2009
Total Posts : 1176
   Posted 2/16/2010 10:46 AM (GMT -6)   
pepphell said...
Razzle, you seem to be very knowledgeable. I have got real questions for you or for anyone else who feel obliged to answer:

a) Is it possible that one have gluten intolerance, but they continue to eat it without any effect. (for example, i've eaten gluten all my life without feeling anything, doesn't make sense lyme has made me gluten insensitive).

b) if you give up gluten, what's left there to eat? (given that you also have allergies to soy/eggs etc)

c) my doctor thinks i've have candida, but what can i do to get rid of it? can low intake of gluten be helpful if gluten can't be eliminated at all?

d) Celiac disease, i hear is harmless so can we all live with it forever?


Hi Pepphell,

I'll answer a couple of your questions out of order....

d) Celiac disease is NOT harmless! Far from it! Untreated, it can lead to intestinal cancer. It can also "open the door" for other autoimmune diseases to develop....please read the following article for more info:

www.umm.edu/news/releases/zonulin.htm

b) There's TONS of stuff you can still eat! Here is a link to a wonderful cooking blog written by a lady who's basically allergic to everything! Karina is a great cook and has been gluten free for quite a while....she started this blog before she discovered some of her allergies, and has slowly gone soy, dairy, you-name-it-free too. You should check it out:

glutenfreegoddess.blogspot.com/

Here is her "how to go gluten free" post:

glutenfreegoddess.blogspot.com/2006/01/morning-after-diagnosis-that-is.html

a) Yes, it is possible to have "silent" celiac disease....that is, you have no symptoms but the doctor finds damaged villi in your intestine during endoscopy. This is a REALLY bad type to have, because I rely on symptoms to tell me when I've been "glutened" by something so I can avoid it in the future. You wouldn't have those symptoms so you wouldn't know..... :(

Good luck!
JoAnn
Lyme Disease, AIH, Hashimoto's, "lupus-like" CTD?, fibro, RA, celiac disease, asthma, psoriasis, Raynaud's, hypertension, osteopenia, sleep apnea, RLS, GERD, degenerative disc disease, cubital tunnel, tarsal tunnel, Doxycycline, Prednisone, Imuran, Plaquenil, Lyrica, Cymbalta, Levothyroxine, Atenolol, Cozaar, Zyrtec, Fosamax, Albuterol, Prilosec, CPAP, Darvon, Morphine Sulfate

autoimmunediseasesgfliving.blogspot.com

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