quincy

I would strongly recommend you get tested for Lyme Disease with the Western Blot test. The two best labs are Stonybrook and Igenix. Try not to use the 2 most common labs, their tests are not as sensitive.

ALL of your symptoms are indicative of Lyme. I had many of them myself. I was dx'd with Celiac in 2010 and after 3 years on a gluten free diet I continued to suffer with a lot of muscle pain, stiffness in my back, constantly going to physical therapy. I also started getting terrible racing heart, bladder problems and all sorts of weird things.

If you have been tested already and it came back negative, I would retest. sometimes a month's worth of antibiotic therapy will cause the Western Blot test to start showing Lyme bands as you kill off some of the spyrochetes the immune system  starts to recognize the lyme and starts making some antibodies that the test will pick up eventually. Many people who are sick like you have an ELISA test or a Western Blot test and it comes back negative and they stop pursuing Lyme. It can be a mistake.

I have been on antibiotics for over a year and with good probiotics I have been able to do this and improve. Also test for the MTHFR genes to see if you have any mutations in your methylation/detox pathways. Believe me, it took years to piece all of these things together in my own journey to get better.  

If you feel like the vaccine may be contraindicated by your history of lyme disease, definitely check with a doctor first.  We are definitely not familiar with lyme disease here as a general group.   If it is just people on the internet saying to stay away from the preservatives and such, getting that special one you mentioned is a good compromise.  But anyone who is extra susceptible to respiratory illness can suffer terrible complications from the flu, so you just have to weigh the risk vs benefit as you have to do in most medical decisions.  

 

The laboratory standards changing is something I have heard of.  This year there was a lot of controversy with certain insurers looking at patients who were on IVIG treatment and therefore had normal IgG levels, telling them "hey you are normal now so we aren't paying for IVIG anymore you need to be reassessed after a 6 month break" and totally screwing up people's lives.  I suspect that has something to do with all of that and more standards being put into place to try and protect against that.

I saw my Lyme doctor and he said the flu shot is ok so long as I am not sick in the sense of having fever or overt symptoms. I still have to find an immunologist in my area. This recent bout of upper respiratory infection really knocked me down hard so I cannot afford to get the flu, I could lose my job if I keep calling in sick. 

What surprises me is that  all of us with celiac and perhaps other autoimmune issues should be checked up front for these deficiencies. I have gone all my life not knowing I had celiac until my 40's. Then found out I had Lyme for who knows how long. 

I say all of this because I hope others are reading/following this thread because I have a feeling many can relate to being sickly all their lives and not understanding why, then finding out you have celiac and thinking "ah ok, well this explains alot," only to keep getting sick and not feeling better after going strictly gluten-free.  THen you start peeling back the layers and there is Lyme, immune deficiencies, detox'ing problems etc etc.

Whoops, pressed reply too fast there.  Make sure the vaccine you get is one of the dead ones, and not a live one.  (Like the nasal mist).   More info can be found here: Open Original Shared Link

thanks Laura and SMRI this has been really helpful.

One thing I noticed on the LabCorp report dated October 10, there is a note below the ranges that says as of Oct 20 the reference ranges will be changing, which will put the scores I received within the new ranges. Not sure how this works. Maybe the measurement will still be the same.

Once I find an immune deficiencies specialist they  will probably want to run the tests again anyway.  Going to get my flu shot. It's just on the Lyme boards, they are all adamantly opposed to them, so in my case it's damned if I do, damned if I don't. But I will get it.  There is a pulmonary group close to my place that offers a shot that has no preservatives, whatever that means.

Thanks for posting those results.  The good news is your total IgG is good, it looks like a potential IgG Subclass Deficiency (Open Original Shared Link ) and that is usually not as severe.  A person I know with that has a similar story as you, his ears are constantly infected and he has hearing loss from the constant infections so they keep him on antibiotics all the time.    Sometimes other things they check can still mean you need IVIG therapy, but just a few low sub-classes doesn't necessarily mean you need it.  I would definitely follow up with the immunologist so they can at least take a good look at it, and at least have someone to go to any time you get those infections.

 

There isn't much else you can do to boost immunity other than to take care of yourself overall, anything that improves your overall health is a good plus to your immune system.  If you are of the severity that you need IVIG, many people get a huge improvement in their health after going on it, so it isn't necessarily something to be afraid of.  Myself, I was like you, the sickly child, always catching everything, and once I learned and was able to treat the true cause of it all, it helped me a lot.  So for now while you are waiting to get that appointment, just do the best you can to take care of yourself, and then you can get some good answers.

Thank you, Laura TX  much appreciated. The doctor who did the labs, at my request, said the same thing.

Any thoughts on getting flu vaccines, or do you avoid them?  Many on the Lyme group from another site say to avoid the flu shot. I get it because I work around college students every day. But the last few times I felt bad afterwards and had to take a day off from work. It kept me from getting the flu, which in the past has been just horrendous, with high fever and upper respiratory problems.

Hi Quincy,

I have Celiac disease and Common Variable Immunodeficiency with low IgG and IgA.  People with immunodeficiencies have a greater prevalency of autoimmune disorders... I also have lupus and things related to it.  When I was first diagnosed over a year ago, my immunologist said that just low immunoglobulins is not enough neccesarily to merit IVIG treatment.  They have to look at certain things with your B cells and T cells, and what your vaccine response is, along with the immunoglobulin levels.   Then from that the decision is made of a diganosis (i.e. just Open Original Shared Link or the more involved Open Original Shared Link).  There are cutoff levels for IgG values that sometimes need IVIG, and always need IVIG.  The lower you go, the more likely you will need it.  Have you seen an immunologist yet?  That is certainly your next needed step.  

 

When it was first discovered I had CVID, it was incompletely diagnosed by a rheumatologist.  Please get yourself to an immunologist who specializes in immune deficiencies, so you have a complete diagnosis and nothing is skipped.  It is likely your doctor, if they are not a specialist, is not going to have the skill set needed to interpret your results.

 

Lastly, please go check out the Primary Immune Foundation's website at Open Original Shared Link, they have a lot of resources.  They can even help you find a doctor if needed:  Open Original Shared Link

 

From the best of my knowledge there is only one other person on this board with experience with immunodeficiencies, a person whose child has it.  They will probably pop in to the thread soon.  Let us know what happens, and if you just need someone to talk to about the new discovery, I am here for ya.  The good thing is that you now know the cause of all the past infections and such, and it is great being able to treat the actual cause.

Thank you for the responses. I just got my lab work:

IgG Serum is 776 and the reference range starts at 700

IgG1 below normal. It is 339 and the reference ranges starts at 422

IgG 2 is good, right in the middle of the rangee

igG 3 is below normal, it is 37 and the reference ranges starts at 42

IgG 4 is in the normal range but it is 15 and the new range will start at 2 to 115 for adult males.

I have not seen an immunologist yet as I just got these results. My CD57 is low also, like 24. There is one close by that is an Immunologist/Allergist. Graduate of Yale. I don't know if these numbers are that bad or what. I have been treated for Lyme this past year, dx'd with Celiac in 2010.  Been sick since a child. Started with ear infections, got meningitis at 6 months old. Not supposed to be here on this earth really. Until this recent bout with a bad head cold and cough, fatigue and short fever, I was doing very well not getting sick. This was a bit of a set back for me. I am taking long to recuperate this time but I went through the ordeal of my mother's open heart surgery and recovery so I was really stressed out and running to the hospital constantly.

thanks for any advice or info.....!

I recently test for the IgG subclasses and had some relatively minor deficiencies. My doctor has not shown me the blood work so I don't know which ones.

I know that since a child I would get constant upper respiratory infections, sinus infections and ear infections.

anyone else have any knowledge about these issues and how they treated it? My understanding that minor subclass deficiencies by themselves do not mean you have to have IGIV.  

any other ideas on how to boost immunity?  supplements?

Hi, I just wanted to share with you guys that I have been gluten free for over 2 years now. I finally was able to get a better doctor when I moved to the USA. I told him that I have still been having issues regardless of the change to my diet and medication. We randomly decided to shoot in the dark and test me for Lyme Disease. Turns out I have Lyme Disease!

The reason why I am posting this is because as I researched this I realized that people who had LD were also experincing worse symptoms when they ate gluten, so they went gluten free but they weren't celiac.

It's a bit of a controversial subject in the medical community because no one is sure on how to manage or treat chronic Lyme Disease. Acute, however, is usually easily treated within a month.

I think I may have been affected either 4 years ago or I was infected a decade ago. A certain percentage of people end up with chronic arthritic symptoms, nerve, and brain issues. There's a huge list of symptoms that could and are linked to being infected.

So if you are having issues, you haven't been diagnosed with celiac disease, you are having problems being diagnosed with anything, ask your doctor to run a simple blood test to check for Lyme. Sometimes the blood tests, in the early stages of Lyme come back normal but a chronic case will usually be a positive blood test.

Hope this helps someone out. I have a long road ahead of me now and I don't know if I can or will be cured or if I will be able to eat gluten again. I'm just happy that I have some answers.

 

same here. I was still sick with fatigue, muscle pain in my back, hips and legs, body temp was off. was constantly in physical therapy for muscle knots. stab in the dark asked my doctor for a lyme test and it came back positive. been on abx for a year with alot of probiotics and am feeling better.

It may be helpful to talk with the kitchen staff, like GFinDC said.  If they put out gluten-free food next to gluten food on the hot line, they maybe could get you some from the back, or you can call in your order ahead of time and have them get it from the main container before they put it out on the line.  You can also ask them to change their policy to where gluten-free foods are together on the line away from gluten foods.  I would think your chances of success would be better there than some other places.  Also, form a friendly talking relationship with one of the head staff, and go talk to them periodically to make sure nothing has changed.

yes, thanks for the tips. I usually read all the ingredients cards and stick with plain chicken, steamed rice/veggies and salads, nothing too fancy and I try to avoid anything that is close to gluten items. 

I will be doing bloodwoork soon, its been awhile, so I will see where my antibodies are, hopefully close or at zero readings....

I eat twice a week at the Whole Foods cafeteria/buffet. Is this just too risky for Celiacs? I don't seem to be extremely sensitive since its been 4 years since my dx, but still, I don't want to be getting too much gluten exposure.  I try to find the safest items such as rotisserie chicken, rice, and steamed veggies and or salads.

anyone eat there, or is it just not safe due to cc?

I was quite ill for a while before and after diagnosis.  I kept asking the Gastro doc if there could be anything else going on. It turns out several years later I was dx'd with Lyme disease.  If you have spent time outdoors hiking, gardening, camping, especially in Lyme infected areas like Northeast, Mid-atlantic or Midwest, I would get a Lyme Western Blot test done through IgeneX, Yale or Stonybrook University labs.  Just adding my opinion, because I was attributing all of my symptoms to celiac when in fact they were Lyme.  

many are complaining of jaw pain and neck muscle aching.  TMJ and jaw pain are closely related to fibromyalgia which has a high incidence in the celiac population.  I have chronic muscle and tendon pain even after going gluten-free for 3 years, though I have to say I eat out alot and I now have to curb my eating out because inevitably I am being glutened alot.....

I am wondering if my symptoms are hypo thyroid.  My latest TSH was 3.25.  My functional medicine doctor got me down to 2.5 a few years ago but

it has gone back up.

I have been experiencing alot of muscle pain lately.  I wake up with stiff muscles every morning. Fatigue and listlessness.  I recently went for a trigger 

point massage and the therapist revealed painful points all over my body, thighs, butt, back and spine. He never went up to shoulders or I would have

been in worse agony if he had. 

Could all this muscle pain be thyroid related.  My PTH was 17, which was low.  I am taking hydrochlorothyozide 12.5 mgs for calcium leakage from the kidney's  because I have osteoporosis in my femur neck.  

I say all this because my point is similar to gifree's.  Since going gluten-free 3 years ago, it's been one thing after another, a downward trajectory rather than an upward one to better health.  This really sucks I have to say.

I am going through something similar.  I started getting into making espresso and frothing milk. Seems my dairy intake is more

than my body can tolerate, and I have been gluten-free for 3 years now.

your doctor should have checked your Vit D, ferritin, and other vitamin levels. You might be malnourished depending on your level of villous atrophy.

also, your gut may be in a state of disbiosis, meaning you have an overgrowth of bad bacteria and little of the good bacteria.  A good probiotic is good for that as well as eliminating all the processed gluten-free junk foods out there. 

ditto what GFin DC advises.  it took me over a year to start to feel better, and 3 years later I am still dealing with residual problems, though frequent bathroom trips are mostly a thing of the past.

Hey all.  I'm an active 32 year old male who was diagnosed last November.  I'm experiencing some bone pain around my ribs and collarbone.  It comes and goes.  Sometimes I notice it more than others.  My bone density is slightly below average and my IGG was 81 two months ago.  I'm not taking any meds.  Does anyone have insights?  Is this common?  My CBC was good and my vitamin panel was fine.  I do have total villous atrophy.  My liver enzymes were elevated but returned well into normal ranges on a strict gluten-free diet.

it could be the osteopenia. I assume you had a bone density test.  I had rib pain when I was first diagnosed and it took a while for it to dissipate. I had a follow up bone scan and found out my density went down in my hip to borderline osteoporosis.  FInally my endocrinologist ordered a 24 hour urine collection to measure the amount of calcium I am excreting. and it turned out to be quite high so I have to take something to try and correct it.

don't assume that as your intestine heals your calcium absorption will improve and and correct your bone density. there could be other things out of whack that might interfere with re-mineralization of your bones.

Hi Lady Eowyn,

thank you for the advice. There was a time when I took this supplement for the thyroid and my TSH went down to 2.25, but I have continued to take this supplement (it's called thyroid synergy) but my number has crept back up over the last few years back to 3.25

I feel alot better than before when my Vitamin D and ferritin were very low, but since those numbers are now in a very healthy range, I don't feel the fatigue and depression I used to have. I still get cold hands and feet alot though.

I have been to several doctors who don't think there is anything wrong with my thyroid with the number at 3.25. But I still have odd symptoms related to sleep disorders of waking at night with my heart racing, panic, nervousness, and I still have a touch of depression and anxiety at diff times. I don't know if those sleep symptoms are related to thyroid.

I don't know what else to do when endocrinologists tell me there is nothing wrong with the thyroid.  I had T3 and rT3 and T4 checked and they fell within the normal ranges as well. so maybe thats just what my TSH is supposed to be?

I recently was referred to an endocrinologist by my celiac doc because my hip is borderline osteoporosis now. 

My results from labcorp are:

TSH: 3.25

PTH: 17

Calcium 9.5

24 hour urine calcium: 560 mg (>300 is high).

The endo put me on 12.5 mgs of hydrochlorothiazide which is supposed to help the kidney keep calcium in.  I have never had a kidney stone that I am aware of though my brothers and grandfather had them.

My symptoms include poor sleep, awaking in the middle of the night to panic attack-like symptoms: racing heart, tingling in hands, panic and confusion. I get these attacks often.

My recent celiac panel has come back negative, so I don't think I am getting any cc from gluten.

my chiropractor says I should have a scan of my parathyroid just in case I have nodules, but all my numbers are normal

anyone have any thoughts?  Is the PTH on the low side and the TSH too high?

thanks all

My first celiac support meeting was enlightening because just about everyone was comparing which ssri they were taking and which ones did not agree with them. That was when it clicked that all us with celiac have a very common challenge with low serotonin levels due to gut damage. It is very likely that many of us require something to increase our serotonin levels

I had a very hard time with most of the newer ssri's but had almost no breaking-in period with prozac. It was a perfect fit for me and much needed relief from the terrible worry/anxiety/depression that I was constantly fighting. I hope that zoloft is that way for you.

FYI, for some of us that cannot tolerate any ssri's, some have found success with the natural supplement 5HTP, which is a serotonin precursor. Vitamin B6 in the form of P5P is also a good one for neurotransmitter health. Taken together improves chances it will have a beneficial effect.

Celiac for 30 years.

"Hear instruction, and be wise, and refuse it not." I definately will see a Doc. Thanks for posting this topic.

Opa3,

keep in mind, I went undiagnosed for probably most of my life, so the osteopenia was the result of malabsorption. You have been gluten free

for many years, so it would have to be assumed that you have healed and been absorbing calcium and vit D properly during that time. You

may be having muscle pain in the area.

I'm a male/ 68 and yet to have a bone scan. I notice when I jog that my left hip begins to hurt after about 5 minutes. The right is OK. The pain comes and goes throughout a 30 minute walk/jog treadmill workout. What symptoms does a T- score of -2.5 have? Am I starting osteopenia myself?

Until I can get a scan, I'll err on the side of caution.

Hi Opa,

The first test I had after my diagnosis was a bone density scan. I was surprised because I always worked out and felt strong. I was shocked to find out I had osteopenia. My first symptoms leading up to a diagnosis was pain in my right hip.

a score of -2.5 is borderline osteoporosis, so if my score was -2.6, for example, I would officially have osteoporosis for that particular bone, in my case the neck of the hip bone.

I would strongly advise that you speak to your doctor, or perhaps an endocrinologist, to have a bone scan done, though I don't know your diagnosis as celiac or gluten sensitivity.

Just had my check up at the Celiac Disease Center at Columbia University. I started with a bone scan after a year and a half wait since last one.

Unfortunately, my gluten free diligence, supplements, and organic whole foods diet, and exercise has not improved some of my density readings, specifically at the right hip.

My GI wants me to see an Endo with bone specialty.

has anyone had similar difficulty in improving bmd? I don't know if I am eligible for Forteo as I don't think I am at the point of fracture, but I am only 51 and don't want it to get worse or stay the same as it is. My T score for the neck of the right hip is -2.5

thanks for any feedback from those fellow sufferers.

I agree with you Irish! However, I would add that as much as I respect Dr. Green for his medical knowledge of Celiac, he is an AMA doctor and I don't always agree with him 100% with regards to things like this. I also do not agree with his stance on endoscopies. He is adamant about having one for diagnositic and follow up reasons but I don't agree. Not everyone on the planet needs to be scoped. Doctors have become too reliant on them and now they won't even render a diagnosis and use their little brains to figure things out using the many other avenues available because they want to "see" damage to believe it. This is the mentality that keeps millions from obtaining a diagnosis and their suffering goes on.

I have been using a very high quality, expensive probiotic for 25 years now because a long time ago, when I was having horrific stomach problems, my doctor decided to do stool testing and discovered I had virtually no good bacteria in my gut, due to the then undiagnosed Celiac and other problems I had. I started using them and never stopped because I find that my plumbing works better with them included in my diet. As far as I am concerned, you can never have too much good bacteria in your gut! There is so much crap in our food, antibiotics are taken too frequently (for some) that I think it a good idea for those with stomach problems. If you are having trouble with them, then by all means stop but that should be investigated because good bacteria should not cause problems in your system.

As far as the age old stance of the AMA in that anything not blessed by the FDA and the AMA is dangerous and the ingredients cause for worry....bunch of horse pucky. If you use a good probiotic from a reputable company, that should be sufficient to not cause worry. The FDA constantly approves drugs that go on to kill some people or cause serious harm so the FDA needs a dopeslap...it's all about control for them and a piece of the money pie.

I go to Dr Green's office at Columbia for treatment, and I can say from my experience with their nutritionist, they are very conservative about supplements. I recall just after I was dx'd I was told to bring in the supplements I was taking. I brought in a bag of them, and they said get rid of everything except the vitamin D and then said to take a basic Multi. The rest was to get whatever I needed from food. I did not take that approach, but I cannot say for sure that my way of taking various minerals and amino acids and herbs has helped me any more than just a multi and food.

When I went to a Functional Medicine doctor, I also found out I had zero of the good bacteria and an overgrowth of the bad (disbiosis). So I was put on a flagyl type antibiotic and then did a treatment of VSL #3 to restore everything. It did wonders to help me, so I tend to disagree with Green on that point also.

If you don't want to take a probiotic you can eat some fermented foods and get enzymes and probiotics that way.

Is anyone doing Bob's oats? I tried soon after dx based on my GI's nutrionist advice (just 3/4 cup), but I just didn't feel well back then. I tried once more and still no good.

I am doing very well now, so I thought I would give it a try again.

My cholesterol situation is not good at all, and before dx, I managed to bring my numbers in line with a good low carb diet which included starting the day with

a good oatmeal/flax meal/cinnamon breakfast. It fills you up till lunch time too, so I would like to try again.

just wanted to see how many of us are trying gluten-free oats again.

Did you ask the company? This is from thier website:

. I have several food allergies. Is there a possibility of cross contamination in your facility?

A. Amy's Kitchen recognizes the needs of our customers who have allergies or sensitivities to nuts, gluten, certain spices, etc. Amy's always fully discloses all ingredients (except for specific spices used in the product) on the ingredient statement and will answer any questions that will help consumers decide what products they can safely consume.

A wide range of activities and cross-checks are completed to ensure that cross-contamination and/or inadvertent use of the wrong ingredient does not occur in our facilities. Examples include:

-Full shift manufacture of products with complete clean-up of all food contact surfaces between products. Pieces of equipment that come in contact with food are cleaned, sanitized and inspected prior to the manufacture of the next product.

-Inspection of all incoming raw materials to assure they are free from contamination.

-Separate item numbers for all ingredients and packaging materials; these are checked by two individuals on receipt of the ingredient and three people on use of the ingredient to confirm the correct item is used.

-Use of colored tags, papers and containers in production as an addition visual check to ensure intermediate components are not interchanged.

-Designated areas for flour and nonfat dry milk use to control airborne allergens and minimize spread.

-Bar code readers at packaging lines to ensure correct package is used with each product.

-Analysis for gluten in our in-house allergen lab:Each manufacturing run of a Gluten Free product is tested to ensure it complies with the FDA definition of Gluten Free (<20 ppm).

-Potentially problematic ingredients are screened in

I know this topic is ongoing. Has anyone gotten info from the company as to what the parts per million are? I have eaten the gluten-free burrito's lately and have noticed some extra trips to the loo.

I usually stay away from her stuff due to bad things I have heard, but I guess now that I am feeling much better I got a little lazy having to cook for lunch.

I will switch to gluten freeda's burritos, but they are a little smaller than Amy's, but worth it if they are in a dedicated facility...

thanks everyone!!