The Healing Process...

[MauriceGreene]

Have any of you fully healed or healing celiacs/gluten intolerance people gone through a phase where your real main symptoms are gone and you dont feal ill but you just dont feel GREAT. Like you feel okay and can get on with your day but you dont feel like you have energy to burn and you just want to sleep. Discuss..

[CarlaB]

Yes! I know gluten is a problem for me, and I feel somewhat better off it, definately worse if I eat it, but I'm NOT better. I am currently going through the testing for Lyme Disease, if that's not it, then I'll keep looking as I know those with "just" celiac are supposed to get better from the gluten-free diet, and I'm not.

[MauriceGreene]

Yes! I know gluten is a problem for me, and I feel somewhat better off it, definately worse if I eat it, but I'm NOT better. I am currently going through the testing for Lyme Disease, if that's not it, then I'll keep looking as I know those with "just" celiac are supposed to get better from the gluten-free diet, and I'm not.

What are you iga, igg, ttg levels. If they are not down to normal then its understandable to think there is still room for improvement. Idk about lyme disease it is very very very rare only 200,000 in the US. Thats 0.04% chance. Assuming that both having celiacs and lyme is independent of each other the probability of having both would be around 0.0004%.

[CarlaB]

What are you iga, igg, ttg levels. If they are not down to normal then its understandable to think there is still room for improvement. Idk about lyme disease it is very very very rare only 200,000 in the US. Thats 0.04% chance. Assuming that both having celiacs and lyme is independent of each other the probability of having both would be around 0.0004%.

I'm only gluten intolerant, I did not test positive for celiac, but had a positive dietary response. I was gluten-free when I went through testing, but the doc only took the IgA and it was normal.

I don't believe Lyme is as rare as that. It's apparently as underdiagnosed as celiac, and is a very political topic ... and it's under-reported. It's actually looking pretty likely in my case, rare or not.

[MauriceGreene]

I'm only gluten intolerant, I did not test positive for celiac, but had a positive dietary response. I was gluten-free when I went through testing, but the doc only took the IgA and it was normal.

I don't believe Lyme is as rare as that. It's apparently as underdiagnosed as celiac, and is a very political topic ... and it's under-reported. It's actually looking pretty likely in my case, rare or not.

Interesting. IgGs can take a very long time to go down and that may be causing you greif, if you actually were producing them (but obviously you didnt get it tested). From what I have read it takes atleast two days for the tick to remain on you to transfer the disease. If you got bit on the back then its understandable but two days is quite a buffer of time to notice a tick. Anyways best of luck with regaining your health.

[CarlaB]

Interesting. IgGs can take a very long time to go down and that may be causing you greif, if you actually were producing them (but obviously you didnt get it tested). From what I have read it takes atleast two days for the tick to remain on you to transfer the disease. If you got bit on the back then its understandable but two days is quite a buffer of time to notice a tick. Anyways best of luck with regaining your health.

I have probably had 50 ticks in my life when I lived in the country as a child. I've had whatever is making me ill since before high school, but it comes and goes. My step-father used to remove the ticks with a cigarette which is a good way to transfer the toxin .... plus I'm sure I had some on me for more than 2 days as I had very long hair and I'd find them on my head. I have 47 of the 75 symptoms of Lyme ... if you have over 20 it's considered a possibliity. I got this off Open Original Shared Link "In 1998, the estimated incidence of Lyme disease was about 6 per 100,000 people in the U.S.; however, there may be considerable under reporting. " So, we really don't know how common it is. Since docs who diagnose it are hard to find, there are probably a lot of people who have it and never get diagnosed in addition to the under-reporting.

I doubt it's celiac causing me the extent of the trouble I have .... I also think that if someone doesn't heal from being gluten-free that there's probably more to their illness than they think. I've been almost a year gluten-free and still cannot function normally, so there's obviously another problem for me ... and I don't even carry the celiac gene! Celiacs should see improvement on the gluten-free diet ... my digestive system is better, but ALL the other symptoms remain. I would encourage people who don't get better to keep looking.

[marciab]

I am still more tired than I feel is normal for my age and I have been on this diet since September 2005.

However, I felt completely healthy for 2 weeks in October. So, I know it can happen.

I have not had the urge to sleep. But, before going gluten free I went wheat free and discovered it was making me sleepy ... Have you looked at other intolerances ?

I was not tested for celiac, but I have had a very strong response to the celiac and elimination diet. I also got the chemicals out of my diet and do my best to eat only nutrient rich foods. And I also am treating constantly for candida and toxins. When I do something I go all the way

Our bodies are going through other changes than just in the intestines too. I can see that my lips are pink now. I can walk normally all of the time. And I sleep great. Some things are healing .... Others just take time.

I have also become menopausal in the last 5 months, so my body is adjusting to that too. How do you like for changes ....

Marcia

[kbtoyssni]

Yep, this definitely happens to me. I always assume it MUST be food related so I try to analyze my diet but can never come up with anything. I just sent away for enterolab casein testing because I thought that might be a problem but now I feel fine so I don't know. Maybe it's just because I was tired one day or stressed out or I caught a virus or something. I have to always remind myself that non-celiacs have days when they don't feel 100%, too, so if it's just a day or two I probably shouldn't worry. If it lasts much longer it's worth thinking about but a few days is probably nothing. I used to ignore my physical symptoms all the time but since my diagnosis and realization that so many of my health problems are related to gluten, I refuse to settle for feeling anything less than 100%. I've wasted too much of my life not feeling well.

[eleep]

I felt terrible for about five months after going on the diet -- I was going through a really devastating breakup at the time and, on top of the emotional toll and the adjustment in my household, I was doing my best to continue exercising and working and meeting friends out. I tried to act like I wasn't ill because I just didn't want to feel isolated and I definitely didn't want my ex coming back because he pitied me -- that really backfired because I really wasn't quite aware of how stressed out my body was. Stress can delay the healing process -- what finally helped me get back on track was a course of acupuncture and a period where I just surrendered to being sick for a while.

eleep

[Guest cassidy]

I felt much better on the diet but not great, just like the orginal post said. I found out that I had other things going on. I am intolerant to other foods and while they don't make me feel glutened, I certainly function better with them out of my diet.

I also found out I had candida overgrowth, an amoeba, a bad bacteria and not much good bacteria. I took an antifungal, two antibiotics, and tons of probiotics and finally felt like a new person. I had no idea I could feel this good. It wasn't easy to figure all that out and I'm lucky I found a good natural doctor who helped.

So, if you aren't feeling great there are probably other problems going on that you haven't figured out yet. Also, I know now that it takes me 3 weeks after being glutened to feel 100% again. Depending on how often you are getting glutened (happened to me a lot in the beginning) then you may still be having those symptoms most of the time.

[TestyTommy]

I've been gluten-free for 8-9 months now. I feel better, but not well. I'll go through periods where I'm pretty energetic and can function almost normally, but then I'll have periods (like right now) where I am very fatigued and have trouble doing much of anything. My intestinal problems are pretty much gone; it's the fatigue, sleep problems, allergies, skin problems that still persist.

I suspect how quickly you heal depends a lot on how long it took before you were diagnosed. I was sick for at least 8 years before being diagnosed, so I'm trying to be patient. I figure there's a lot of damage that needs to heal, so I shouldn't expect full recovery in 8 months.

[sunshinen]

Yeah, I would say I am just about where you are. Although, I did feel great fairly soon, within 3-6 months. So I know how good it CAN be, now I just have lots of not-so-great/bad patches I assume are from mistakes.

But I also think some of the fatigue and other stuff is candida related. When I first started the gluten-free diet, I was also on a lot of probiotics because I had just destroyed myself with antibiotics for sinus infections (every other month). When I stopped taking the probiotics, things got worse again. So I did a spit test and sure enough, I still had too much candida. I read an Italian study that linked candida overgrowth with celiac. They talked as if treating candida should be part of the initial celiac healing process. I have not been able to find anything else talking about a connection though, but you might want to see if candida could be part of the problem.

[CarlaB]

Since the subject came up on this thread, I wanted to let you know I did test positive for Lyme Disease.

[loraleena]

Lyme is not rare. It can go undetected for years. Read some of Rachel's posts. I too am going to go through the testing she suggested. I too am better, but not normal.

[Rachel--24]

Lyme is not rare. It can go undetected for years. Read some of Rachel's posts. I too am going to go through the testing she suggested. I too am better, but not normal.

Loraleena, good luck with your testing. Let us know how it goes.

I dont know if you've been following the OMG thread but theres alot of info about Lyme there.

So far I believe Carla is the 5th person on that thread to get a Lyme diagnosis.

Its not the best diagnosis in the world but we are rejoicing because its an ANSWER. For me it was the answer to my prayers.

As far as Lyme being rare....its not. Its the fastest growing infectious disease in the world after AIDS.

Many wonder why the Center of Disease Control (CDC)-by its own admission-systematically underreports Lyme disease and contradicts aggressive treatment. According to the CDC, Lyme borreliosis is the fastest growing infectious disease in the United States after HIV, and the number one vector-borne disease in the country. Statistics from the CDC indicate that there were 23,763 cases reported in 2002. However, they acknowledge major underreporting, perhaps 10 times higher than their official estimate. In other words, there are almost 250,000 new cases a year and 2 million people in the United States suffering from chronic Lyme disease. Based on the discrepancy between their own clinical findings and that of the CDC, many researchers theorize that Lyme disease rates may be up to 100 times higher than the official CDC numbers. Although Lyme disease occurs predominantly in the northeast, cases have been documented in 49 states, with a large number of new infections occurring along the West Coast. To further complicate matters, the ticks that transmit Lyme also carry other bacteria, and these co-infections appear to be as complex as Lyme-and as difficult to diagnose and treat.

[key]

What testing did you have done for lymes disease?? Where did you get tested at? Just curious. I have had at least 3 friends and family just this summer that had lymes disease, but they also had the rash and were very sick right away.

Monica

[Rachel--24]

What testing did you have done for lymes disease?? Where did you get tested at? Just curious. I have had at least 3 friends and family just this summer that had lymes disease, but they also had the rash and were very sick right away.

Monica

Monica,

I didnt have a noticeable rash....I also never saw a tick on me. One day about a week after returning from Tahoe I woke up with 105 fever, massive headache, fatigue and other flu-like symptoms. I felt better after a couple of days. I just thought it was the flu. Awhile after that I noticed a wierd bite on me with a tiny ring around it....nothing like the big rashes you see in pics.

I wasnt feeling sick so didnt think much of it. It took about a month for the "bite" to go away....which was very unusual....but I didnt know about Lyme. I was FINE for 2 years...I felt totally normal and then out of nowhere I was debilitated by all these symptoms. I never thought it could be linked to the episode I had 2 years prior. I only got diagnosed 2 months ago...I've been sick for 4 years now.

Lyme is tricky to diagnose unless you get the obvious rash and symptoms at the same time. Only about 50% of people with Lyme get a rash or see the tick. The deer ticks which transmit Lyme are as small as the period at the end of my sentence.

How sick a person gets depends on alot of things. Some people can have Lyme for months or years without symptoms. Eventually it will overcome the immune system as it did with me.

When it happens this way...with nothing obviously pointing to Lyme....the answers are HARD to find. You could easily end up with a diagnosis of CFS, Fibro, MS or some other condition and thats the end of it. Luckily after 4 years I ended up in the RIGHT doctors ofice and he recognized my symptoms as possibly being Lyme related and ordered the tests that very day.

My Dr. only uses Igenix for Lyme tests. Its well known to be the best and most accurate lab for Lyme testing. Open Original Shared Link

Most doctors use Quest or other labs which are only around 60% sensitive....many people with Lyme test negative until they test through Igenix. Sometimes more than one test is needed....I ended up taking 4 different tests. The best test is the Western Blot (both IgG and IgM).....it should be the first test taken.

Also having a doctor who treats Lyme patients and *knows* Lyme is CRUCIAL when trying to get a correct diagnoses.

Not everyone with Lyme will test positive....especially if they'd had the infection for a long time. For this reason Lyme is a clinical diagnosis....based on history and symptoms. In my case my Dr. wanted a full picture...history, symptoms and lots of tests.

Two of my tests were positive and two were negative. The two negative tests were the first ones ordered....the Western Blots. In actuality they were "suggestive" of Lyme and the lab advised further testing with other methods or repeating the Western Blots. ALOT of Dr.'s would have just looked at the negative results and ruled out Lyme right then and there....thats why its crucial that the Dr. is familiar with Lyme.

The next 2 tests were positive for Lyme and my Dr. diagnosed me with Lyme Disease based on the whole picture that was in front of him.

I think the reason Lyme *seems* so unlikely is that we just arent informed. If I had been informed I could have taken antibiotics when I first saw the bite....*before* I ever got sick. Most likely I would have been OK....but I didnt know anything at the time.

I just want people to be informed about this.

I had "considered" Lyme the entire time I was ill (because I was outdoorsy) but none of the Dr.'s would listen and I was denied testing. Also everything I looked up online made me NOT pursue Lyme very aggressively. I was looking at the WRONG sites and getting the WRONG info. Especially regarding the rash...I thought I couldnt have it because I never had a BIG obvious bulls-eye...and also I wasnt aware the disease could be held back by the immune system for some time. I was focused on what was occurring in my life at the onset of symptoms....not ever thinking back to 2 years earlier when I had the flu-like symptoms, fever and wierd little "spider" bite.

If I can help one person each time I tell my story it will be well worth it....hope you guys dont get sick of me.

[CarlaB]

I also was tested by IGeneX. I have probably had it since 1972-1975, which is when I had many, many tick bites. I won't be seeing my Lyme specialist until Jan., so I don't have details on anything else, but my understanding is that it will take quite some time to heal since I didn't catch it by the rash soon after it happened.

[Helena]

If I can help one person each time I tell my story it will be well worth it....hope you guys dont get sick of me.

Hey Rachel, I appreciate all the info. on Lyme's! As you know, I think someone in my family should be tested. I do have one more question for you---once the disease starts to take hold, is it possible to go into partial remission only to have it start up again?

[Rachel--24]

Hey Rachel, I appreciate all the info. on Lyme's! As you know, I think someone in my family should be tested. I do have one more question for you---once the disease starts to take hold, is it possible to go into partial remission only to have it start up again?

Helena....yes, its possible for that to happen. Symptoms may appear, disappear and reappear at various times. Some people who didnt know they had Lyme were able to get it under control with diet, lifestyle changes, supplements, etc. I know of people who have fought it and won.....only to have it come back later. They didnt know they had Lyme but were sick and the changes they made were enough to keep their immune system strong and to keep the Lyme at bay.

My Dr. told me that even after treatment and when I get to the point that I'm symptom free....I will *never* be totally free of Lyme. Its never been proven that it can be totally erradicated from the body. The best chance for this would only be if you caught it in the initial stages. Even then...sometimes the symptoms do return later on down the road. This is why there is ALOT of controversy going on right now about Dr.'s being restricted to only 3 weeks of antibiotic treatment.....its not enough to bring down Lyme....especially in late stages.

The Dr.'s told me that if I get to the point of having restored my health the Lyme would still be there waiting for another opportunity....this would be when my immune defenses are down. They said it could occur if I got into a car accident or caught a pnuemonia or anything that would weaken my immune system. I will also need to live a healthier lifestyle as far as diet and other things that can bring the immune system down.

I'll definately stay on top of this even when I'm feeling healthy because I never want to have to go through this again.

From Igenix.....

"What you should know about Lyme Disease"

Open Original Shared Link

[Helena]

Thanks so much for the info---that was the one doubt left in my mind about whether my family member has Lyme's or a tick-related disease because she has been on the mend (but is not 100% better). In a lot of ways, her story sounds similar to yours. I'll let you know if I manage to convince her to get tested again . . . she might not listen to me, but I'll try anyways so she has all the info. before making a decision.

[lindalee]

I have probably had 50 ticks in my life when I lived in the country as a child. I've had whatever is making me ill since before high school, but it comes and goes. My step-father used to remove the ticks with a cigarette which is a good way to transfer the toxin .... plus I'm sure I had some on me for more than 2 days as I had very long hair and I'd find them on my head. I have 47 of the 75 symptoms of Lyme ... if you have over 20 it's considered a possibliity. I got this off Open Original Shared Link "In 1998, the estimated incidence of Lyme disease was about 6 per 100,000 people in the U.S.; however, there may be considerable under reporting. " So, we really don't know how common it is. Since docs who diagnose it are hard to find, there are probably a lot of people who have it and never get diagnosed in addition to the under-reporting.

I doubt it's celiac causing me the extent of the trouble I have .... I also think that if someone doesn't heal from being gluten-free that there's probably more to their illness than they think. I've been almost a year gluten-free and still cannot function normally, so there's obviously another problem for me ... and I don't even carry the celiac gene! Celiacs should see improvement on the gluten-free diet ... my digestive system is better, but ALL the other symptoms remain. I would encourage people who don't get better to keep looking.

Carla, did I miss the symptoms on this site? I didn't see them-

[Rachel--24]

Here is a list of Lyme symptoms...

Open Original Shared Link

[CarlaB]

Lindalee, that site was where I got the quote from ... I like it because it was a gov. site.

Helena, I have been able to get this under control several times before now with diet, exercise, supplements, lifestyle, etc. I never knew what it was, but it's incapacitated me three times before this. I would also guess one of those "flu bugs" I had as a kid was really a Lyme reaction. All I can say is I must have a really strong immune system! I have always been one of those people with unlimited energy ... I think that is partially due to the fact that when I'm sick I have so much to overcome to accomplish the simplest task, that when I'm well I still have that mindset, I'm not really more energetic than anyone else. So, yes, I think you can get your own immune system to conquer it, to a certain level anyway. I've always suffered from fatigue ... but I thought everyone had it like I do. When you're chronically ill, sometimes you don't know what normal is.

For me it's always been triggered by stress and it doesn't seem that this time I will be able to overcome its effects on my own. Of course, the other times, I didn't know what it was.

[Helena]

Thanks, Carla. The more I read on this message board, the more convinced I am that she has a tick-borne illness. It might be viral, though, as Russian tick-borne encephalitis is a major problem where she was travelling at the time. Years ago, she came down with a weird "flu" (and she did get bit by something a week or two before that---her one foot was so swollen she couldn't get her shoe on.) She never totally got better . . . but a couple of years down the road totally crashed. A number of her symptoms returned + some new ones, some of which are probably due to celiac (undiagnosed). Even after my positive blood tests (and after she had to entirely give up wheat, barley, rye, oats because she gets sick immediately), she won't stop drinking rice milk with residual barley protein, though [sigh]. Am still working on that one.

She is doing a lot better than she was, and has gone back to school full time, but it is a struggle. She gets fatigued easily, I think she has some GI issues, it seems like she catches every cold that goes around. And when she gets stressed and tired sometimes some of the weirder symptoms return (i.e. she gets vertigo and is in pain in the morning ("myalgia").) It's hard to know how she's really doing because she doesn't talk about it unless she is particularly unwell.