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Gluten Free Diet? My LLMD wants me to go on it
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Gluten Free Diet? My LLMD wants me to go on it

I am supposed to go on this diet and I am dreading it...bad!  Anyone else heard of this for Lyme??
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1029507_tn?1287717915
a guy i worked with his niece has or had lyme disease i should say. she lives in new york her LLMD put her on a gluten free diet and she improved GREATLY. do you have trouble with not eating sweets?  that's my downfall, keep me informed if you try the diet.............good luck
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Avatar_f_tn
Hope,
My LLMD recommeded the same for me. I have been on it for almost a month now. It was tough at first because it's such a drastic change in the way I eat.

It has helped a great deal with symptoms. Because the lyme loves sugar and feeds off of it. Also with lyme as you know come yeast which also loves sugar.

I eat 5-6 times a day. My doctor's diet is a three phase and the first is the toughest.

It's hard to eat vegs, meat in the morning. But I just sucked it up and ate chicken, celery, and eggs.

The only thing about this diet is that it makes you really hungry. So make sure that you eat like you are supposed to and take the vitamins and make sure to take a B complex as that gives you a lot of energy.  

Good luck and let me know if you need anymore help with this. JKV
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428506_tn?1296560999
I have read a lot of very strict dietary suggestions for Lyme patients.  I think Dr. B's popular guidelines also include gluten-free.

I never did it.  (Perhaps I should hedge myself and say "not yet?")

In response to yeast, I at times greatly reduced (but never quite eliminated) all sugar and carbs.  (No fruit, no white foods, no sweets, but still some brown rice and whole grains.)  But when my yeast cleared up, I eased the restrictions.  It's a good idea for anyone to watch out for white carbs and excess sweets, but I eat fruit and have the occasional "cheat."

I couldn't feel well on the very strict diets.  I was constantly hungry, moody, and got wicked head rushes and super-low BP and pulse.  I do better on a more moderate diet.

I don't think diet (or ANY part of Lyme treatment) is cookie-cutter "one size fits all."  I also believe that one needs to be willing to change as the situation dictates.  Listen to your body and keep an open mind to trying new ways of eating, but don't lock into a diet that doesn't work for you.  Some people may feel great on gluten-free.  For others, it may be self-imposed torture that doesn't help.  That's my opinion, anyway!

What ever you try, good luck and I hope that it helps.
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280418_tn?1306329510
I will not succeed on this diet, at least, not yet.  In fact, I just downed a cinnamon roll and loved every bite!  Sigh...I will try,  reaaaaally try:)  If it doesn't help, back to sugar - yay!
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Avatar_f_tn
This is one of those aspects in which I think everyone is different in whether they need the diet, and in whether they can tolerate it.

When I got a massive yeast infection, I put myself on a protein-and-greens diet.  The first two days were bad, my BP was all over the place, but that was probably a combination of low blood sugar and the yeast bugs freaking out because I hadn't fed them their usual snacks.

I've had no dairy, no sugar (except extremely tiny amounts in vitamin pills, for example), and no fruit for four months, and I'm rather afraid to try to add things back.  I did have fresh peas this weekend tho, and no obvious ill effects.

I might have gluten problems never identified before, because I sure feel better sinced going on this restricted 'diet.'  I lost 30 pounds and now am where my weight ought to be.  I'm never hungry and can eat till I fall over, if I want to -- but I just don't crave food and don't crave sweets like I always have before.

I would like to add some grains and fruits back to my diet and will work toward that, but over all I think I'll try to keep this basic concept in place for as long as I can.  

fwiw!  Everybody's different.
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Avatar_n_tn
I just got back from seeing my LLMD and he wants me to try the gluten-free diet to see if this will help with the muscle and bone pain that i'm having.  I just don't get it, is it just a trend with these docs.  I have no stomach cramps, diarrhea, no blood work that shows remotely that i have this problem.  Even chiropractor is scratching his head as to why either, as no muscle testing shows any type of food allergy.  I would love to hear from you about if being this restrictive food wise helps with the dibilitating pain of Lyme??  Please email me, ***@****
thanks.
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Avatar_f_tn
Try it.  What have you got to lose?
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1132574_tn?1271676066
I'm kind of with Wonko on this one. I think it is a matter of what works for you...it's a matter of experiementing and finding what works for you and changing as your situation merits...  and that is probably different for everyone. Wonko and Jackiecalifornia have already heard me whine about the diet LLMD put me on LOL. Initally, the diet was worse for me than the meds were, but now my tune is changing! I'm on a sugar-free and yeast free diet plus I'm a vegeterian. I grew up never eating meat, practically born that way. So I think starting to eat it now would not be a good thing and quite frankly isn't really a possibility in my world.

I've started to add a little dairy and high protein greek yogurt in b/c I really was feeling like crap. On the diet LLMD gave me all fruit and veggies are ok- except corn and potatoes. Even brown rice, whole grain pasta, whole griain taco shells and tortillas are ok.  I have managed to stay away from the sweets pretty well to my surprise. I did cheat last week and had the best slice of pizza of my life, notice I said slice, not 2 or 3 as I might have had before! I surely cut back. I had mostly salad and one slice of pizza instead. It took care of the craving and now I'm good. As wonko said, in moderation, which is a good rule of thumb in general.

I'd be curious to know if any of you have experienced my latest problem... So I am on doxy 400 mg a day. I screwed up the first month, mis-read my bottle and only took 200 mg a day (n owonder I felt fine). Now that I'm taking the 400 mg I'm having stomach issues. Some days are worse than others and I'm trying to find any patterns. But I've also noticed that just the thought of certain random foods, and it varies day to day, can make me feel really sick. Often it is something that I've recently eaten but somtimes not. So sometimes I'll have left overs in the fridge and my hubby will pull them out and say lets eat this and I practically have to run over to the trash can. It's so strange. Or I'll just be thinking what should we have for dinner today, I'll think of something and practically gag. It's awful. On monday though, I felt sick to my stomach all day. It wasn't fun.

I told my LLMD and we are changing my med schedule, we added Zantac 75 before meals and it seems to help.  LLMD told me, well you need to eat and you need the meds, the diet comes second so it you have something that's not on the diet that you can get down, eat it. So that's my current status... Eat whatever doesn't make me want to get sick! LLMD also suggested carnation instant breakfast in the morning for nutrition and for coating the stomach.

Let me know how you all do on the gluten free diet!!!! And if any of you have any suggestions for nausea let me know. I've tried ginger capsules and they gave me heartburn!

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428506_tn?1296560999
I have not taken doxy (surprising given the number of abx I've taken, and the duration of my treatment!) but I have read that it is notorious for stomach upset and must be taken with food.  Keep talking with your doc about how to schedule and what to eat.

Maybe try the ginger in a smaller amount?

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Avatar_f_tn
Hope75 and all,

Just this morning I read an article about the increasing acknowledgment of gluten-related problems, something I've been mildly researching lately.  Don't be frightened by the over-the-top title of the article referenced below, the point of the actual article (which is too long to paste entirely here) is that MDs need to be aware that there are people who ARE affected by gluten and it needs to be taken into effect.

Big props to your MD for even thinking of this.  No one ever mentioned it to us, and we've got a real stew of genes in our family that can produce gluten intolerance, which runs well into double digit percentages in some nationalities/groups.  We have (among other things) Irish, Italian and American Indian blood in various combinations in our family, and all of those groups have issues with gluten or other allergens.

I was a pasta and bread hound for most of my life, but when I gave up grains last year, my gut got as happy as it has ever been in my life.  Try it, you might like it.  It's like having a mean romantic interest in your life:  you think you'll miss them, but funny how good life is after they're gone.
=============================================
Gluten Sensitivity Raises Risk of Death
By Chris Emery, Contributing Writer, Med Page Today
Published: September 15, 2009
Reviewed by Zalman S. Agus, MD; Emeritus Professor
University of Pennsylvania School of Medicine and
Dorothy Caputo, MA, RN, BC-ADM, CDE, Nurse Planner
Action Points  

    * Note that the study found a modest increase in mortality risk among patients with gluten sensitivity and intestinal inflammation.

    * Note that the authors cautioned that the mortality risk for patients with gluten sensitivity may have been overestimated.

Patients with mild intestinal inflammation and gluten sensitivity have a higher risk of death, even if their symptoms are not severe enough to warrant a diagnosis of full-blown celiac disease, a new Swedish study found.
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280418_tn?1306329510
Very interesting stuff!  My gut is better than ever.  I've never had it this easy with digestion issues.  I don't know if it's the antibiotics or gluten free diet (let me rephrase that - gluten 'decreased' diet).  I haven't taken it out of my diet.  I just attempt to reduce it and eat gluten free products in place of other glutenous products when I can.  

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1687031_tn?1359657215
i've had 3rd stage chronic LD for 27yrs. my doctor is one of the nation's leading lyme specialists. she recommends a gluten-sugar-dairy free diet for her lyme patients. needless to say, it's very restrictive. i adhere to it most of the time, and when i stray (particularly with refined sugar) i almost immediately notice increases in my pain, fatigue etc.. after a while the diet gets easier to follow and becomes second nature. it's hard at first (years ago i used to dream about sweets when i'd go without them for a while)...but stick with it and don't lose HOPE!

wishing you success in your battle to combat LD!
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Avatar_n_tn
i have 3 kids with celiac disease----so we have been cooking all of our meals gluten free for over 5 years now.  i remember our ped GI telling me that the gluten free diet might help me with my fibromyalgia---which i am assuming i sprobably lyme disease.  however, i have never gone totally gluten free.  i just thought i'd let you know that gluten free really isn't that hard to do.  it can be inconvenient at times, but we have been able to reproduce almost everything we ate before diagnosis.  my husband and i and 8 of my 9 kids all test positive for one of the main celiac genes, but the disease only activated in 3 of the kids for some reason.  however, i had never heard of it as a way to eat to help with lymne disease.
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1464587_tn?1307495205
Don't forget to take a probiotic with your antibiotics...... I took a low dose of doxy for 2 months and ended up with a awful yeast infection...... sooo painful. Antibiotics diminish the good bacteria in the belly, which can create a yeast infection.
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