ShayFL

Oh and get this. If you have adequate or high Folic Acid, it can mask the B12 deficiency. So the damage happens unnoticed until you are really far gone. It is with these symptoms that we finally get tested for B12 when the deficiency may have been there for years masked by Folic Acid.

My Folic Acid was sky high off the charts because I have always eaten tons of green leafy veggies. Plus a lot of things are fortified with folic acid, not to mention most multis have at least 400 a day folic acid.

Something to consider. Get both tested.

I agree that getting an MRI for peace of mind is good. But like I said, if it comes back negative for MS (which is highly likely) consider B12 and other things mentioned in this thread.

ALSO get your Vitamin D tested.

When I was working on my Phd for Holistic Nutrition, I tried many diets including a RAW FOOD diet. I only lasted 6 months doing it absolutely ANALLY and could barely hold myself up anymore. So sick. I was eating "sprouted" wheat and rye along with juicing wheat and barley grass. And some nasty drink called rejuvalac. I was being glutened the whole time.

Not to mention on a RAW DIET be prepared to spend the majority of your time "thinking about", "buying", "cleaning and preparing", "eating" and "cleaning up after" food. ALL day long. HUNGRY non-stop. You never feel satisfied and it is distracting to try to work or do other activities with a constant gnawing in your gut. I lost TOO much weight and started feeling faint. I was a stay at home Mom. I could have NEVER have held down a regular job with that diet.

I also tried VEGAN for a few years. Got sicker there too.

VEGETARIAN still did not help me.

What has helped is a balanced GLUTEN FREE diet with meats, veggies, fruits and nuts. Some raw and some cooked. I dont eat RAW meat or SUSHI. I dont want parasites.

Toxicity

No toxic or adverse effects have been associated with large intakes of vitamin B12 from food or supplements in healthy people. Doses as high as 1 mg (1000 mcg) daily by mouth or 1 mg monthly by intramuscular (IM) injection have been used to treat pernicious anemia without significant side effects. When high doses of vitamin B12 are given orally, only a small percentage can be absorbed, which may explain the low toxicity. Because of the low toxicity of vitamin B12, no tolerable upper intake level (UL) was set by the Food and Nutrition Board in 1998 when the RDA was revised (6).

I self pay labs....what I meant was I was going to check with the labs I use to see if they offer the uMMA and the price. If it isnt too expensive then I will get one done.

I am front loading right now as best I can without injections. Will be interested to see what my uMMA shows on my high sublingual/transdermal dose.

I had injections in the past, but when they didnt seem to be working after 2 months, Doc. said stop. Maybe I needed them EVERY week like you got instead of every 2 weeks and for a longer time.

Someone in another thread said they got injections for 3 years for resolution.

Just give yourself a hug. No one is foolproof. Love yourself. Be gentle and kind to yourself and just get back with the program. And continue to heal.

Thank you Deb,

But that thread has no expertise or scientific backing of ANY kind. Just a few people talking about B12 levels and one person Mr D giving advice to cut back without any support for his recommendation.

Absorption of dietary B-12 takes place in the very last part of the small intestine, right before the colon. Absorption requires a biochemical helper molecule called

Welcome.

There is no wrong way to find out that gluten is a problem for you. But only ONE cure. A gluten free diet.

It is up to you if you want a biopsy and bloodwork.

I did bloodwork only and passed on the biopsy. I ordered the Celiac panel myself. Self pay.

A positive response to the diet.

And yes....I used to get nauseated from time to time. I have not had that feeling since gluten-free.

Hi Bob,

Have you cut out dairy as well? Many Celiacs cannot heal until they remove dairy. You can remove it for 3 months and if better try to reintroduce it (a lot of people tolerate it after they heal).

Also, soy and corn cause issues for many people Celiac or not. Once you remove your main gastro irritant (gluten) these other irritants show their nasty little heads.

Also consider the SCD (Specific Carbohydrate diet).

Digestive Enzymes including HCL.

Probiotics

SeaCure or Intestive

And be really sure there is no CC (toiletries, creams, toothpaste, dishes, cutting boards, old toasters, etc.

I think Beth gave some great advice.

Sometimes our frustrations come out in unintended ways.

Positive blood work = Celiac.

If you are not well and still eating gluten this is why. Biopsy can be so very inaccurate depending on where, how many and who interpreted the samples.

And if you are still sick, ask for a repeat biopsy. Maybe they will take the samples from an actually damaged area this time to confirm your already Celiac Dx based on blood.

The diet you are referring to also endorses something called "high meat". Look that up and see if you are still gung ho.

Looks like all blood and an ultrasound. No anesthesia. You will be fine.

Hydrochloric Acid tablets. You need a HIGHLY acidic environment in your stomach to digest meat. If you eat A LOT of carbs with a meat meal (say more than 25 grams) those carbs will make the stomach too alkaline to digest the meat.

Ive had similar situations with my husband, just not about the gluten.

My DH has a Harley. And he is a very responsible guy. But he also likes beer and wine and gets them when we eat out. But I always drive home. When he got the bike, I made him promise he would NEVER drink and ride that bike. He promised. Well one night we met up for dinner, I in the car and he on his bike. As soon as we sat down, he ordered 2 for 1 glass of wine. And I just stared at him in shock. He said "what?" and I said....arent you on your bike? And he said...yeah..so....I am a grown man and I want some wine with my dinner.

Well!! My DD was sitting right there and I blew a major gasket mainly because of the example he was showing her. After all this time me telling her what a responsible guy he is and he would never drink and drive. And she always saw me drive us home. I was furious!!

It just got worse.....the fighting over it.

FINALLY we had to get a therapist ad our marriage was taking a nosedive over it (note: I come from an alcoholic father). 6 weeks and it was finally resolved.

But it took that......

I feel for you.

I just fire doctors that do not listen to me.

Your fired.......and then I find another one. I have a good one now, but I went through a lot to get to her.

Ummm...is your doctor using the "old" TSH guidelines????? They were changed some 5 years ago.

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You are clearly HYPOTHYROID.

And being hypothyroid can lead to all sorts of neurological conditions that mimic MS. ALL of those tests may be a BIG waste when all you need is proper thyroid medication.

I was HYPOTHYROID at 2.8 TSH. And I take Armour which will suppress TSH. I do not feel well unless my TSH is around .03.

The thyroid problem and anemia also tie in with Celiac and gluten sensitivity.

You will need to get your iron stores up so that you can utilize your thyroid medication properly. There is A LOT of fabulous info here:

www.stopthethyroidmadness.com

It is up to you if you want to go through with the MRI. But if it were me, I would print out the NEW TSH guidelines and take them to my doctor and ask to be treated. I mean demand to be treated.

Im going to find out how to get a urinary MMA. Now I am curious.

I would opt for organic free range and grass fed meats foremost. And you might try adding a HCL tab with meat meals to make sure you have enough stomach acid to digest them properly.

How are you with high fat meals?

Is it just bagels? Awhile ago a study came out that said that eating a bagel for breakfast could cause IBS symptoms. Something about bagels......

Mine were "fine" as well. And my MMA was normal. But after doing some research, I have learned that normal labs do not mean you are not deficient.

I thought having a "normal" MMA via serum was enough. NOPE!

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The urinary MMA is much more accurate and sensitive.

And I am experimenting with taking mega doses of B12 sublingually and transdermally and I am seeing improvement in my neuropathy so far.

I know there have been threads on this in the past. But they get buried and new people are on all of the time, so I want to discuss B12. I am doing some research and will post it in here.

Everyone please relay your experiences with B12 deficiency and supplementations/injections, etc.

Hey AliB - found support that low gastric acid leads to B12 deficiency which goes right along with what you are researching right now.

B12 deficiency attacks numerous body systems (neurologic, hematologic [blood], immunologic [immune system], vascular, gastrointestinal, musculoskeletal, and genitourinary), so the signs are symptoms are many--- but everyone is different on how they present-- and they can predominate in one system.

Typically B12 deficiency strikes the neuro system and people exhibit neuropsychiatric manifestations. So anyone with neuro or psych signs and symptoms must be tested for B12 deficiency:

---paresthesias (numbness or tingling to extremities)

---dizziness

---balance problems

---gait problems

---clumsiness (incoordination)

---frequent falling

---tremor

---muscle spasticity

---visual problems

---impaired fine mortor coordination

---nocturnal cramping in arms and legs (like restless leg syndrome)

---bladder-bowel incontinence (advanced--when B12 def. has been undiagnosed or misdiagnosed for an extended period of time)

psych problems

---depression

---apathy

---irritability

---poor memory, memory loss, cloudy thinking

---confusion, disorientation

---dementia

---paranoia

---delusions

---violent behavior

---suicidal ideations

---hallucinations

---psychosis

Other common signs and symptoms

---fatigue

---weakness

---falls

---pallor

---anemia (but you do not have to have--- which fools doctors

---sore tongue

---weight loss

There are more signs and symptoms--- but B12 deficiency attacks the myelin and is a demyelinating disorder---- similar to multiple sclerosis. That is why there are so many neuro signs and symptoms.

If B12 deficiency diagnosis is made late--- and people suffer from signs and symptoms for some time--- they may suffer permanent neurologic injury.

I know this thread is taking on a different direction, but I think it could be important. B12.

I thought having a "nromal" MMA via serum was enough. NOPE!

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The urinary MMA is much more accurate and sensitive. Seems my normal might not have been normal afterall. I am sticking with the B12 and see what continues to happen.

I have many symptoms of MS, but I am not looking for a dx for that. I just want to get well. They have no cure for MS. And no effective therapy. So personally I dont feel a desire to go down that road.

I had an "open" MRI for an injury for a car accident. I am VERY claustrophobic so I was a nervous wreck. But the room had a chair close to the machine where my husband could sit and talk to me while it was happening. I had something covering my eyes, but didnt feel too closed in. Yes, noisy. But not anything horrible. I wont take Valium or drugs like that. But I was fine.

Funny about the B12. My last test showed a level of 280 3 or so years ago. I never retested because I started taking sublingual supplements and knew that it would skew the test unusually high. Why bother. I had injections years ago, but after a few months it didnt seem to help, so we stopped.

Hearing you say it took 3 years........

Well my MMA was normal a few months ago which is supposed to indicate adequate B12 levels.

But I am experimenting anyway. For the last 3 weeks, I have been taking a 5000 Methylcobalmin sublingual tab after each meal and snack (that makes 25000 a day) PLUS I bought a transdermal cream that has 1000 per 1/4 tsp. I am rubbing that into my skin twice daily. My research says we only absorb roughly 2% of what we take in which would mean I am getting about 540 a day. Which is a goodly amount.

And I must say that my neuropathy is finally easing up. MUCH less itching and creepy crawlies. And a substantial decrease in numbness and tingling. My neuro also made my hands feel "stiff" in the morning and the last few mornings they have felt good. I am cautiously optimistic.

So if they say MS or not....You may want to try B12 to see. It cannot hurt.

I had SEVERE low stomach acid shortly after my DD was born 12 years ago. If I ate anything with protein...it felt like someone was stabbing me all the way through my intestines. Horrifying pain really. I was so desperate one night at 3 am, alone as Hubby was overseas and with a newborn. So much pain, all I could do was call a 24 hour prayer line. I went vegetarian naturally. Then I went to a health food store and read some books and bought some HCL. 2 tabs with each protein meal did the trick. No more pain.....over time I weaned off of them and could digest protein fine. I wonder if a little could help now. The enzymes I take dont have HCL. I have no pain digesting protein.

Sorry...didnt mean to hijack the thread.

But maybe bloat could be related and others can find a gem of wisdom somewhere in here.

I got tired of it being blank......