ShayFL

My policy is NO GLUTEN INSIDE. DH and DD can eat in the garage or on the porch for gluten foods. Gluten foods do not even touch my countertops or my dining table. This makes it so I at least have one place in the world to relax: MY OWN HOME.

The reality is that neither of them eat much gluten foods anymore unless they are out away from home. DD still likes her organic pop tart thingies, but she just toasts them in the garage (we have a small microwave, toaster and fridge out there for their gluten foods) and eats them on the porch.

It certainly is easier when they get older. My DD is 12. Bless you!

Your biopsy shows you have villi damage. The tips of the villi must heal before you can digest dairy properly. You can try just gluten-free and see if you get better. If you dont, then you can take out the dairy and soy.

Getting well is a personal journey. It works differently for each of us. But we are here to help you along the way.

If you are going for a GOLD STANDARD diagnosis, you need to stay on gluten for now because if your bloodwork comes back POS, they will want to do a biopsy on you.

If you dont care about a Dx....and just want to feel better now....then you can start a gluten-free diet.

Stick with simple foods right now: plain meats, pure spices, eggs, plain veggies, plain fruit, nuts & seeds, plain rice, corn on the cob, potatoes and the like. Dry and most canned beans are o.k., but check the ingredients. Look for: Beans, water and salt.

I would avoid dairy and soy for a few months and then once you feel better reintroduce them.

Best of luck!

And please ask questions here. We are happy to help.

Most people have reported greater improvement with: hydroxocobalamin injections

To add to what Deb has said (which I agree with), you would do best to stay on your gluten-free diet. You are feeling better. Yeah!!

If it were me, I would avoid as much Soy as possible by sticking with whole foods and avoiding processed foods.

I personally do not believe we are meant to eat dairy. And it causes me to choke on my own mucus. You can eliminate it for a few months and then reintroduce to see if you react to it.

You could have Candida overgrowth in your intestines.

A good pro-biotic can help as can avoiding sugar and sweet foods for awhile. If you google "Candida" you can learn A LOT.

RO,

I am not a medical doctor. I do have a Phd in Holistic Nutrition. But I acknowledge my limitations. I am a researcher by nature and I recommend that you do your own research with regard to anything I say.

But I interpret that quote to mean (for those with PA) that taking a massive amount of B12 early in treatment and then taking smaller amounts at periodic intervals will not heal the neuro symptoms. As your husband has discovered on his own. He has to take the shots on a consistent basis now for 10 years.

For those with moderate to severe neuro symptoms, "front loading" a massive amount of B12 and then taking a smaller amount once a month may not "heal" them. They need it consistently (like your husband).

Incidentally, I skipped my B12 for 2 days to see what would happen. Neuropathy got worse. I think I am building on a major deficit. So I am sticking with the original plan of 25000 or so a day (sublingually and transdermally) for 6 weeks. Will reassess then.

My Doctor works with me. She is a Holistic MD in Brandon FL. Not hard to find her online. She knows my education and background and allows me a lot of "experimentation" with her blessings. She, like me, recognizes that the human body is so very complex that not one person can know it all. She is open to learning from her patients. I love that about her. I could go tomorrow and ask for B12 shots, but I tend to be pretty self sufficient. Going to her only when absolutely necessary.

If my experiment works over the next 6 weeks, then it might just be more convenient for me to get her to Rx the shots so I can give them to myself at home every 2 weeks.

IN the beginning...stick with simple foods that are naturally gluten free. Once your symptoms are gone, you can try eating foods that say "processed in a facility...." and see if you react. BUT YOU HAVE TO GET WELL FIRST.

Most Celiacs have to cut out dairy for a few months while the villi heal. The tips of villi are what digest dairy. SOY is a major problem for most people in general. You wont want to hear this, but I would cut soy out too for now. Once you are all healed, you can add it back in and see if you digest it well.

For now: Plain meats, pure spices, fresh, frozen veggies and fruits, whole grains like rice, corn, buckwheat, millet, quinoa, potatoes, sweet potatoes, nuts and seeds.

After you heal you can try some of the premade gluten free products. But many have problems with them at first. YOU NEED TO HEAL FIRST.

Did I mention that?

All of this is VERY CHALLENGING, but you will work through it.

Also, your children should ALL be tested for Celiac. 50/50 chance you gave them the gene and if your husband also has a gene, the odds are even greater.

It is easiest to have a gluten free household, but if you cannot do that, then you can do what I do (gluten foods eaten outside only). Or ask around on the forum. Many people run a "mixed" household. I dont.

Wishing you well!

Print out the new ranges:

Open Original Shared Link

It is from the official American Association of Clinical Endocrinolgist site. THEY CANNOT ARGUE WITH THAT!!

If they do, keep changing doctors till you get one that has a clue.

I saw your post and had to respond. I know you are worried. So I did some research online. I found this:

Open Original Shared Link

It sounds like that once you go on a Gluten Free diet your T-Cells will go back to normal. Try not to let complicated medical terms scare you (although I know it hard). I do not think you have cancer.

And regardless of what the blood tests say....you have intestinal evidence of Celiac. You need to be on a gluten-free diet for life. Make sure they test your total IgA. If you are deficient in this antibody, the other blood tests will be invalid, so they will need to do IgG on you.

That is an excellent point Janet. That is why you should get all of these tested:

TSH

FREE T4

FREE T3

And both antibodies

They MUST be the FREE.

If you take Synthroid for 6 weeks with no luck in symptom improvement, retest these same labs. If your T4 is in a good range (upper end) but your T3 is in the middle or lower you may benefit from adding some Armour.

I personally feel my best when my TSH is around .03 My Free T4 is in the upper quadrant and my Free T3 is at the very top or slightly over. (No hyper symptoms here).

I have a great doctor who uses a novel approach to treating thyroid. She doesnt just look at the lab sheet. She actually asks me how I feel.

And some really GOOD NEWS is the later you start your period, the less chance you have of getting breast cancer later on.

Enjoy it!!

I use Armour. And I LOVE IT!! I tried Synthroid and it made me violently ill. I will never touch it again.

I was told my thyroid was fine for 10 years when the reality was I was hypothyroid. Once I got wind of the new ranges for TSH and took a copy to my doctor, he immediately dx Hypothyroid and put me on medication. 10 years of suffering........Due to stupid lab ranges being wrong.

Anyway, the symptoms I have related to thyroid go away when I am at the right dose. However, it changes from time to time. I know I need more when I get muscle twitching and numb lips. I just had to increase 15 mg last week. It has been a year long process getting me up to a good dose. With thyroid you have to be patient (not my strong point).

I multi-dose as well. 4 times a day in equally divided doses. I take it sublingually. 1 dose right when I wake up. 1 dose right before lunch. 1 dose before dinner. 1 dose before bedtime. I have a very regular schedule and rarely forget a dose because of this. I keep my pill box either in my pocket or close by. When taken sublingually most of it goes right into your blood stream. Some does get swallowed though and likely I could be on a smaller dose if I took on an empty stomach (and not right before eating). But this system works for me and always will as long as I am consistent. My doctor said the most IMPORTANT thing was to take my doses at roughly the same time everyday. However, no problems with the few times I forgot and doubled the next dosing.

AND THIS IS INTERESTING: My Mom was Dx Hashi's not with labwork. No. She never tested positive for antibodies. She got Dx when they removed her thyroid for cancer. Her doctor said the reason she didnt have antibodies in her blood was that there was little left of her thyroid to attack. My Mom is on Synthroid and complains of symptoms ALL the time. Her doctor goes by labs and wont increase her dose.

My sister has Hashi's and is on Levothroid and a small amount of Armour. The Levothroid alone did not relieve her symptoms, but when she added 30 mg of Armour all the colors in her world showed back up. She had energy. Lost weight. And is no longer depressed.

The bottom line is thyroid is tricky and you MUST find a good doctor who will work with you. You may be fine on straight Synthroid. You may need a different synthetic like my sister. You may not tolerate it at all and need Armour. Or a combination of both.

Best of luck to you!

Menstruation has a lot to do with body fat. Are you underweight due to the Celiac?

8 is way too young. The average age is 12 which means anywhere from 10 to 14 would be considered normal by US standards. So I would not worry into your 14th birthday.

Are you developing otherwise? Breast buds? Body hair? If you are then it may just take a little patience.

You say you are Celiac so I hope you are on a 100% gluten-free diet. This is what your body needs to develop properly.

Best wishes for staying well. I am trying to be very strict myself even though my reactions (vertigo & migraine) dont end me up in the ER. They are no fun. So I am cooking non-stop too. Hang in there!

Deb

Your post was a catalyst to make me do some more research for what I am doing. My background made me feel comfortable with this experiment. And I found a lot of support for it on medical sites and actual people using large amounts like I am sublingually.

My intention is not to take this much forever. No. A month to 6 weeks to see what it does for my neuropathy. If better, I will gradually reduce until I get to a dose that keeps me symptom free.

Here are just a few things I found:

Using Vitamin B12

(cobalamin, cyanocobalamin, hydroxocobalamin, methylcobalamin)

Recommended Daily Intake (Healthy Individual): 6 mcg.

Dosage (therapeutic): By injection: from 1000 mcg every few days up to 10,000 to 25,000 mcg/day. Oral (including sublingual) and nasal gel: probably 500-25,000 mcg/day. Sublingual and (especially) nasal gel products may rival B12 shots in their ability to increase blood levels. Studies like that of Mayer et al. suggest the cyanocobalamin form of B12 typically used in supplements isn't as clinically effective as methylcobalamin.

Cost: moderate.

Side effects, cautions, contraindications: Evidently none.

NO TOXICITY LEVEL for B-1 B-2, and B-12, The Sky is The Limit

There is no toxicity level known for B1, B2, and B12, and a few manufacturers make a separate B12 with 500 mcg, 1,000 mcg, 3,000 mcg, and even 5,000 mcg (take 1 to 3 times daily, stick under your tongue and let it dissolve underneath your tongue for more efficient absorption). I get at least a total of 5,000 mcg of B12 over a 24 hour period (used to take 20,000 per day for a while), and have notices that my musical abilities and coordination have greatly improved since I have been taking the larger dosages, as B-12 helps ones "Mental/Physical Coordination" (good for musicians and athletes). Many people take a separate B12, in addition to a "multi B" (As the amount of B12 in a B-100 is so small, typically only 100 mcg or 0.1 mg).

ZONE 1 - any dose of cyanob12 or hydroxyb12, oral or injected, daily, weekly or monthly,

a small amount of healing, needs tests to confirm, can correct blood abnormalities. There is no mention of dose proportionate healing in the literature.

ZONE 2 - Doses of methylb12 or methylb12 and adenosylb12, 120 mcg to 25,000 mcg oral or sublingual, 5mg appears to be sufficient for single sublingual dose, <=5mg injection. Dose proportionate healing, at least at relatively lower levels to 1500mcg/day is noted in the literature. Several sublingual doses per day are more effective than a single dose. Serum halflife starts out at about 20-50 minutes for unbound cobalamins. Widespread healing is a naked eye event. Probably adequate for 95% of healing outside the brain and spinal cord.

ZONE 3 - Sublingual doses above 60mg in 90 minutes. sc injections >= 7.5 mg.

This is the beginning of the zone of upregulation of neural healing in humans. The threshold is at around 7.5-15+mg sc injection. Hypothecized that this much is needed to cause diffusion transfer into cs fluid in the few minutes of highest concentration before clearing by kidneys 10mg methylb12 sc appears adequate and NOT proportionate over range 7.5-25mg as long as the threshold was reached. I use a 0.5cc 5/16 inch 31 gauge insulin syringe. Injections must be done daily. Symtoms start returning within 3 days. There is no "loading" effect contrary to common belief. The "loading" protocol might keep PA folks on the edge for years but it won't allow neural healing or toxin protection

My feet are regaining feeling in this zone after 15 years of increasing numbness not reversed by 3 years sublingual and 2 years 5mg injections daily. I'm not the only one reversing numbness.

ZONE 4 - Limited research evidence. Intrathecal methylcobalalmin appears very promising.

Zone two appears sufficient for most healing. Those with numbness and more severe neurological symtoms would likely benefit from higher dose methylb12 injections in addition to daily sublingual doses for Zone 3 healing.

__________________

Oh dear...why did she tell you to take BEFORE your meal???? The packages I have say "during" or "after". I can see how this irritated your stomach (especially if you did not eat within seconds of taking that pill). No food in there and a hefty dose of acid right in. If you even waited a few minutes with that pill in there, it would cause irritation.

It might also be that your stomach was damaged to begin with. For that there is a product called PepZin GI. It heals the stomach. One could take that for a month with a lower protein diet to allow the stomach lining to heal. Then if there is still a problem, try the HCL.

**As always please do your own research and/or consult your Dr. before taking any supplements.

Im not offering any scientific backing on what I am doing to myself. As I said several times....I am experimenting with MYSELF. I am in no way recommending that ANYONE else do what I am doing. I was simply sharing what I am doing. My body has been a science experiment for 15 plus years. Some with doctors involved in the experiment and some on my own. Some things work. Some things dont (for me).

I simply come in here to share. Take away what makes sense and discard the rest. Ignore me entirely. Or read what I have to say and look for support online and in medical libraries.

And I ALWAYS recommend that people do their own research no matter what the read in a forum from me or anyone else. I certainly do.

I listen to others in here, and if something new comes along, I go and see if what they are saying is supported anywhere.

I also do not mind being corrected if I am wrong.

You can Google and find tons of support stating that the more B12 you take orally the less you actually absorb. That is why the FDA has labeled it non-toxic with NO upper limits. So I might just be spending my money and getting nowhere. But I am trying something and I am going to get the uMMA soon and see what my efforts have done (or have not done).

A good doctor is a gem to treasure. Hold on to him!

I have experimented with the food combining principles myself. But find that if I just eat fruit or just carbs without protein/fat my blood sugar skyrockets. So I do mix....but I go light on the carbs with a protein meal. I am pretty low carb anyway.

You should have enough Ferritin to take Armour without problems, but ideally it should be around 50.

Here are some helpful links:

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

***Remember no disease (or syndrome) is an island. They are usually clustered.

The DQ2 is the most common of the celiac genes. I believe 80 or more % of celiacs have that gene. The rest are DQ8 (with a small amount having neither).

I agree. Your doctor is an IDIOT. Your doctor would look at a pink cow and say yes, she has udders and yes she is bovine, but I cannot call her a cow because she is pink.

Yes, you can pass this gene to your children. But remember, it is just a gene. It does not mean if your children get this gene from you they will develop Celiac. They may never get the disease. And if they do, you know what needs to be done. A gluten free diet. Of all the genes for diseases that can be passed on, IMO, this one is the best you could hope for.

Maybe this will help:

Open Original Shared Link

Seeing a good doctor is always sound advice.

But taking HCL is not dangerous in anyway (unless you go crazy with it taking tons of it). Take 1 tab with a protein meal. If you feel fine or better...no worries. If you get "some" improvement but not enough, the next meal try 2 tabs. If you get a burning in your stomach simply take a little water with baking soda (1/2 tsp) to neutralize the acid. This works quickly. (The burning indicates that you DO NOT need the extra acid), but a few trial times will not cause problems at all. If you get the mild burning after a few goes...you dont need the supplement.

After a month or so....try removing 1 tab (if you take 2) and see how it goes...cut tab in 1/2 (if you take 1). Ween off it it and see if it was the kick start your system needed to get right back on track.

I only needed to take HCL for a few months when my own body kicked back in.

I dont see the ranges for T4 and cannot tell if it is all are FREE T4. So I am only looking at TSH and with your numbers like that bouncing all around....my vote is for Hashimotos Hypothyroid (it makes the thyroid sputter as it is being attacked. Autoimmune).

Have you had antibodies tested????

I would be willing to bet dimes to gluten-free donuts that a lot of your symptoms will clear on proper thyroid medication and a gluten-free diet.

BTW Synthroid made me violently ill. I wont touch it.

I take Armour. Right now Armour is on backorder, but their site says August 18th lower doses will be back to full production and by December the higher doses will be back to normal. This happens once in awhile every few years with Armour. My Doc. gives me an Rx for 4 months at a time thankfully.

If I were you I would ask for:

TSH

Free T4

Free T3

And BOTH antibodies for thyroid.

Plus

Vitamin D

ANA

Ferritin

I know the advocates of this raw meat diet say it is the way our ancestors ate umpteen years ago. But anyway you slice it, we just live in a different world NOW. Sure if the earth was still pristine and unpolluted by chemicals and toxins, maybe I would catch fresh trout, fillet it, sprinkle with salt and enjoy. But it just isnt so. No matter how "organic" and how "fresh" and how "grass fed" and how "free range" EVERY animal (including us) is touched by microbes exacerbated by pollution and modern medicine (antibiotics).

And sure....most of the time the raw meat might be just fine. But once in awhile you will get a parasite. The ODDS are in FAVOR of it.

Years ago I briefly dated a guy that LOVED raw meat of ANY kind. Steak tar tar, sushi....he couldnt get enough of it. When I met him, he was a tall, healthy looking man. We only went out 3 or 4 times, but he had my email and phone number. About a year after the last time I saw him, I got an email from his Sister (who had sent one to everyone in his address book) with a note saying that he had passed away (at 32) from a "mysterious illness"........She said the doctors never figured out why he just wasted away. I dont know of course. But I always remember that and I have not touched Sushi since.

This screams thyroid problems to me. My doctor wanted me to get an MRI to investigate the possibility of MS several years ago. I declined - denial perhaps - I've just got too much on my plate right now. Turns out I think most of my symptoms are because of Hashimoto's (that I just been diagnosed with). I did have the low B12, as well; so clearly have problems with assimiliating B12 via my digestive system (so I take a sublingual).

But I'd urge you to get your thyroid panel done. You know, thyroid problems can mimic many diseases - and it's very serious, and should not be ignored. And, oh yes, I've had my TSH only checked all these years - and that was high. Go figure why no one checked into it further (but they obviously went by the old system). Good luck.

This was/is EXACTLY my experience. Thyroid made ALL the difference for MANY of my symptoms. It completely gets rid of my muscle twitching and facial numbness. As I was titrating up to the right dose, I knew when I needed an increase because my muscles would start twitching all over and my lips would go numb.

I think my neuropathy is related to B12 and malabsorption. It is getting better too.

I am convinced I will have TOTAL resolution of neurological symptoms.