posted
Aside from a few terrible but short herxes, I have been feeling better since going gluten free a couple of months ago.
Much more energy. I feel like I am catching a glimmer of normalcy.
I was curious if I really had Celiac so I sent away for a saliva genetic test. The results say that I do not possess enough of the genes to put me at high risk.
"Although not zero studies have shown that this is associated with an extremely low risk for celiac disease."
So I guess I just have gluten intolerance.
Is this temporary because of the Lyme?
What is the reason I feel better?
Is a saliva genetic test accurate?
Posts: 472 | From New Jersey | Registered: Dec 2007
| IP: Logged |
posted
The majority of the immune system is in the gut. Healing your gut is one step to recovering from Lyme. I'd stay gluten free at least until you conquer the Lyme, then maybe revisit it.
Posts: 984 | From San Diego | Registered: Nov 2006
| IP: Logged |
massman
Unregistered
posted
As a species we survived without grains for millions of years. Only in the last 10,000 years have we consumed grains.
sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
I felt better gluten free. I can eat gluten now, and it's certainly more convenient, but I don't eat it all the time like I did pre-lyme. I was so sensitive to it when I was sick that even a crumb would trigger symptoms for three days.
Massman, what kind of diet do you suggest? I mean, to eat, not to avoid.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
| IP: Logged |
massman
Unregistered
posted
"The Pro-Vita Plan for Optimal Health" by Jack Tips ND, PhD.
amazon should have it. Or www.drjacktips.com and look in Apple A Day Press section.
Breakfast like a king, lunch like a prince, dinner like a pauper.
5 sources of protein, 5 veggies, small amount good fat first 2 meals of the day. Fast one day per week if you can, eat whatever one day per week.
Great energy increase is what happens to most people.
IP: Logged |
sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
What about those of us who need more carbohydrates? I have eaten similar to how you post, but felt HORRIBLE! I feel better eating carbs (besides veggies).
Fasting is out for me. I'm hypoglycemic. But I know it's a good thing for those who can.
I've read lots and lots about diet over the years so have come up with my own combination of all the good things I've read, but I am curious for your ideas (always open to learning).
I'll go check out that website.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
| IP: Logged |
massman
Unregistered
posted
How much fat do you eat ? Fat stabilizes blood sugar better than anything. Despite the current yapping about "more protein for blood sugar".
You could add more fats to Jacks plan. Throwing avocadoes in a blender with veggies and a few eggs has worked well for me.
I vary, have been eating more carbs lately.
See if your library can get a copy of Jacks book. Best I have read on nutrition, and I have read a lot.
IP: Logged |
sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
Oh, I eat all kinds of fats! Coconut oil, real butter, olive oil, etc. I make kefir with whole milk. My splurge is a daily latte and it's made with whole milk.
Can't buy a good avocado here .... I tried yesterday. The organic ones strangely just rot and never ripen. The conventional ones are always rotten (I guess that's how Kroger thinks they are supposed to be?).
I do keep my sugar stable.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
| IP: Logged |
posted
LymeMd posted on his blog that several lyme patients weakly positive celiac antibody tests and negative biopsies, and do better off gluten just like celiacs. Some other people posted that those might have a pseudo-celiac condition that resolves after successfully treating lyme. I have followed some blogs and some really do tolerate gluten afterwards. And they do not have the genes, either.
What genes did you have? I am negative for DQ2 or 8 too. But I do not have any results, I do not know which of the DQ genes I have.
Posts: 366 | From Europe | Registered: Nov 2008
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- SixGoofyKids,
There are many wonderful gluten-free whole grains that are fabulous nutrition - in moderate amounts.
Quinoa (regular and red); Millet; Amarath; Buckwheat (really a legume); WIld Rice (really a grass); and many, many varieties of brown, red and black rices.
Legumes, too, are very good at keeping blood glucose stable throughout the day. Lentils and quinoa make an excellent mean, anytime of the day . . . veggies added a few minutes before serving. Olive oil to top it off and you're set to go.
Since lyme really stresses the liver (as does medicine), especially the Cytochrome P-450 liver detox pathway - and when that is impaired excess porphyrins are a result, carbohydrates can prevent the toxic porphyrins from getting to extreme numbers.
This is one reason that many lyme patients cannot tolerate a low-carb diet and to do so can be damaging if any kind of porphyria is involved. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Cockapoo,
I have questions about the saliva test but it can be accurate - just not necessarily.
As for gene tests, infection can create celiac so the test would not be a good judge if just checking for genes.
Or course, since you were off gluten before the test, the only test that would hold any accuracy would have to be genetic. But, if you had celiac caused by infection, the test you took would not be accurate.
I had blood tests for celiac because the GI biopsy had come back negative but they failed to tell me to eat wheat daily for weeks prior. I had been gluten free.
So, years, later a bright MD did the genetic test and I do have the genes for celiac.
Still, as many kinds of infection can trigger this, it is important to continue a gluten-free diet.
We also have much more to learn but research is not connecting gluten with dementia and other neurological problems. Some people never even get the GI distress but have other symptoms.
After the lyme and other infections are treated, you might do better but I'd sure not chance it now. Gluten creates so much pain and inflammation and can really slow down progress. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
quote:Originally posted by Keebler: - SixGoofyKids,
There are many wonderful gluten-free whole grains that are fabulous nutrition - in moderate amounts.
Quinoa (regular and red); Millet; Amarath; Buckwheat (really a legume); WIld Rice (really a grass); and many, many varieties of brown, red and black rices.
Legumes, too, are very good at keeping blood glucose stable throughout the day. Lentils and quinoa make an excellent mean, anytime of the day . . . veggies added a few minutes before serving. Olive oil to top it off and you're set to go.
Since lyme really stresses the liver (as does medicine), especially the Cytochrome P-450 liver detox pathway - and when that is impaired excess porphyrins are a result, carbohydrates can prevent the toxic porphyrins from getting to extreme numbers.
This is one reason that many lyme patients cannot tolerate a low-carb diet and to do so can be damaging if any kind of porphyria is involved. -
Very interesting, thank you!
When I was gluten-free I discovered all those wonderful grains. I don't think a lot of the heavily processed items made to look like gluten foods are really the way to go since there is so much that is naturally gluten free.
You do get in the habit of eating gluten free once you get the hang of it. I have yet to eat any gluten today, though one of the side dishes I'm making for dinner tonight has gluten. I ate no gluten at all yesterday. We are definitely not as reliant on gluten products after going two full years without a crumb of it.
I am one of those who can tolerate it again, so have added it back to my diet. Honestly, being able to eat it makes things easier, but I find I didn't miss it all that much. I still buy Namaste gluten-free brownie mix because it's so much better than "normal" brownies. I still eat corn tortillas with my fried eggs ... or else diced potatoes browned in the skillet with onions.
Interesting you say that about porphyria as I am treating pyroluria, which is a form of it.
Just a side note - I do not have the celiac genes.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
| IP: Logged |
posted
The test I had was a genetic saliva test which gives you the results via email. I guess I can say which one.
MyCeliacID tests for HLA-DQ2 and HLADQ8 (alpha and beta subunits).
My results:
While your result is positive for half of DQ2, studies have shown that this is associated with an extremely low risk for celiac disease. For this reason, your result puts you in the same risk category as an individual who is completely negative for DQ2 and DQ8.
I called the company today and they said my results should be interpreted as a negative but they have to say positive if you have any of the DNA. He said it was highly unlikely I have Celiac.
I told him about my Lyme and he said an underlying infection can cause allergies such as to gluten or wheat.
So I am definitely staying GF for now. I am enjoying the energy too much and it's not that hard.
Keebler you have such great ideas for food. I have to make that lentils, quinoa and vegie dish! And Six, anything with fried onions Yum!
Posts: 472 | From New Jersey | Registered: Dec 2007
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- The great thing about lentils is there versatility.
Saute onions and garlic in coconut oil for a curry dish.
Use olive oil for a thyme or Herbs d' Provence seasoning.
about 20 minutes before done, sure there is enough liquid (water or broth), just *** the quinoa if you want to keep it to a one pot meal. Then add veggies near the end.
you can also season with a mint tea bag - just cut it open. Add crushed fennel seed.
Some just add lentils to all sort of soups to give some body.
============
Thinking ahead about Thanksgiving stuffing: just use wild rice or buckwheat - or whatever grain you'd like. Maybe add lots of portabella mushroom pieces . . . season the same as you would stuffing. It's really the onions and spices that add flavor. The buckwheat provides a bit of chewiness that other grains do not.
It's an experiment sort of thing. My attention span is too short to measure or keep track of what works year to year. But starting with a broth base helps.
This time of year I've very tempted to enjoy some nice wheat products. Much of it is a trip down memory lane, triggers with holiday food commercials and missing family, etc. But, for me, wheat has an addictive draw (and I've been been addicted to anything - except maybe dark chocolate). I would want to eat it again the next day. And the next.
However, it helps to remember that even a trace of gluten can have negative effects in brain function for MONTHS after consumption and I don't have any wiggle room where my brain is concerned.
For me - even with a trace of wheat by accident (in chicken broth) - it is usually day three afterward when a seizure will crash through. I do have the genes but the test said something like 98% certain. I keep thinking sometimes, well, maybe I'm in that 2%. Hah! But my DQ2 and DQ8 were positive with blood test. I think they just could not say anything was 100%.
So I have to remember all the research and my guess is that we will find out much more in the future.
posted
There are plenty of people who have biopsy-diagnosed celiac who do NOT possess either DQ2 or DQ8 genes.
The genetic tests can certainly help rule celiac IN, but they cannot diagnose celiac, nor can they rule it OUT.
With every new test, we get doctors who assume that the test is black-or-white.
50 years ago, they decided that the biopsy was the only way to diagnose, so they started calling it the "gold standard" of diagnosis. It certainly could show the villi damage typical of celiac--but only if the surgeon happened to take the smaples from AFFECTED portions of the intestines.
Villi damage tends to be patchy, and except for extreme late stage, is not visible to the naked eye. Add to that the fact that you have 22 FEET of intestine and they only take a few 1/4" biopsies and it's obvious that they can easily miss damaged areas. So a "normal" biopsy doesn't mean you don't have celiac.
Now we have much more sophisticated antibody tests, that are much more sophisticated and sensitive than the biopsy (not to mention less invasive), but they still claim that the biopsy is the "gold standard." (It also costs much, much more, hmmmmm...)
Ultimately, though, it really doesn't matter if you are celiac or "merely" gluten intolerant. Many people think that gluten intolerance is simply early-stage celiac, regardless of genes.
Posts: 23 | From Pennsylvania | Registered: Nov 2009
| IP: Logged |
massman
Unregistered
posted
Great info Taximom - thanks
And here are the "gold standard" lovers, too afraid to make decisions on their own.
IP: Logged |
seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Chicken broth has gluten Keebler? No way. I have never seen it on any labels I've reviewed. Are you sure?
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Not all brands but, yes - If it contains barley malt. Read labels very carefully and if you have someone shop for you they need to know this, too.
I was getting one type from Trader Joe's. They seem to have introduced another with a similar front photo (I give my shoppers labels so they can find stuff more easily).
Well, I was on my third box of this broth before I realized it had barley malt added.
I've since just started making my own (getting half chickens with bones) and, by doing so, also don't have to worry about the plastic lining in the box or a can. Tastes better, too. Freezes for convenience (let cool first in fridge and be sure leave room in a heavy glass freezer jar so it does not break). -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Taximom,
Thanks for that great link and info. Hey, the link you posted with the period attached does not go through - but in the URL bar, just deleting the last . will send it through. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
posted
Taximom... They missed my celiac about 30 yrs ago with that "gold standard" test because I had been off wheat for several years by that time.
I continued with my wheat-free diet anyway, since I thought I was "allergic" to it. The only problem was all the other gluten I was ingesting in processed foods and in oats, etc.
It finally hit the fan about 3 yrs ago. Now that I'm gluten free, I feel SOOO much better!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Remember, everyone - next week:
Pumpkin CUSTARD works just fine. Be sure gluten is not added to the mix but just bake a pie without the crust. Or put some ground nuts on the bottom of the pan. Put the pie pan in deeper pan in the stove and add hot water so it can steam like a custard.
I know there are gluten-free pie crusts but, to me, too much work and too high on the glycemic index anyway. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
posted
Taximom, thanks for the link. I read the doctor's article and realize my husband was right.
He said why are getting the genetic test if you know you are not going to stop the GF diet. Darn he's always right.
I guess I just loved the fact that I could order a test myself without these darned doctors getting in the way!
But of course tests aren't accurate, I should'a known!
Keebler, I love your ground nuts idea! I have been trying pie crusts with gluten free flours but ground nuts sound so much better!
Also anything wrong with canned lentils/beans over the dryed? I know the salt but anything wrong gluten wise. I don't think...
Posts: 472 | From New Jersey | Registered: Dec 2007
| IP: Logged |
posted
I am hearing a lot lately on gluten free for lyme some from patients and others from Doctors. Even on Wiki gluten free is one of the few diseases recommended for treatment of lyme patients.
Gluten-free diet From Wikipedia, the free encyclopedia Jump to: navigation, search A gluten-free diet is a diet completely free of ingredients derived from gluten-containing cereals: wheat (including kamut and spelt), barley, rye, and triticale, as well as the use of gluten as a food additive in the form of a flavoring, stabilizing or thickening agent. It is recommended amongst other things in the treatment of coeliac disease, non-coeliac gluten intolerance, dermatitis herpetiformis, migraines, Lyme disease and wheat allergy. Additionally, the diet may exclude oats. Some people for whom the diet is recommended can tolerate oat products and some medical practitioners say they may be permitted,[1] but there is some controversy about including them in a gluten-free diet because studies on the subject are incomplete.[2] Even if oats are included, it's important to source these from a facility that is gluten free, as most oats are contaminated during processing. Look for oats which are certified gluten free if you are following a gluten free diet.
Posts: 805 | From Utopia | Registered: Feb 2006
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Cockapoo1996,
about canned legumes (or anything) . . . you don't know what they were cooked in (that could be aluminum pots) . . . the cans themselves can leach tin or plastic from the lining.
It's good to have a 2-week supply of canned goods for power outages, snow storms and days when cooking is just not going to happen. As a rule, it's best to stick with glass containers - or cook yourself.
I find the tiny dark green French lentils to be the best and can cook in under 30 minutes, no soaking required - just rinse first.
The orange lentils cook in about ten minutes and have a nice flavor but are also a bit higher on the glycemic index, I suspect. -
[ 11-21-2009, 01:08 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[Smile]](smile.gif)
![[bow]](graemlins/bow.gif)
Printer-friendly view of this topic