celiac, muscle weakness, bone aches, fatigue... im lost.

[white-star]

I was on endoscopy this month and my vili is back! Happy news. But the fact is even my vili grew back i feel worse and worse. I have nausea, 3 times per week. I have bone aches all over. My CRP and sedimentation is ok. My muscles are so weak. I am tired all the time. I am so fed up with it. I dont have energy to work, and i love my job so much. I am not depressed, or maybe i became because of this symptoms :). my b12 is normal, blood work is normal. I do have low D vitamin (20). I do not have diabetes, since my glucose is OK.   Been to bone scan- i do not have ospeoporosis.  I have hashimoto, but not bad enough for pills.  Please help, my  doctor said she doesnt know what else it could be. i am 25 years old. 

[Ennis-TX]

Going to say I find a nice blend of Magnesium, Niacin, and B-vitamins works wonders for my energy and fatigue. I take a collagen supplement also that seems to help with joint issues. I have a list of what I take to stay active brand wise. I get most from luckyvitamin or amazon depending on who has the best prices.  On a side note, I have to take way above the amount of B-vitamins my doctors say I should have. Otherwise I feel sluggish and weak, just have trouble even lifting light things around the house. 1.5-2x the recommended daily dose in smaller increments spread out through the day to prevent slumps seems to work for me, do the same with the magnesium and niacin. Might just be me but I think those of us with celiac might be more prone to "Slumps" with medications as they wear off and out of our systems. Iron might also be a issue and is associated with muscle fatigue.

List of things I take and brands https://www.celiac.com/forums/topic/116482-supplement-and-foods-you-take/

Talk to your doctor about these various vitamins, and supplements or venture out on your own. Magnesium would also help with the bone density and any nerve issues you might have. I really do suggest a chelated version like doctors best that is easy on the stomach.

 

[pikakegirl]

Also have Hashimotos. The "normal" scale is super wide. I have to be below 2, preferably 1.5 or bad symptoms of fatigue, depression and panic attacks. Everyone has a different number where they feel balanced. Please check on this. My doctors think anything below 5 and above 1 is normal so no med needed. They are so wrong.

[deb-rn]

Chlorine and Fluoride & Bromine(hot tubs & pools) compete with Iodine in the thyroid.  Lots of water is good for the body, but if your thyroid is not in optimal condition, these additives could be throwing you off.  There was a predictable rise in thyroid problems in the USA when these were added to our water supply!  We recently bought a Berkey water filter to remove the chlorine and fluoride.  We added liquid iodine to our supplement list because we use the super healthy pink Himalayan salt that has no iodine in it.  Standard table salt loses it iodine in a couple months, so you're not getting what you think you are!  So many little things can interrupt normal, healthy physiological pathways.  It just doesn't seem fair that the majority of people can eat what they want, when they want and never have any noticeable side effects.   The rest of us scour the internet to figure out how to cure these odd symptoms.

Are you eating corn and oats?  Dairy?  These are big triggers for many people.  Once you peel away the gluten, you sometimes notice symptoms coming back.  That happened to me.  I went through an elimination diet and it was my husband that found a lot of things that were triggering his IBS.  He never knew it was the homemade tomato juice he drank every day along with fried eggs, that caused him problems.  He now has no tomato products and can eat limited eggs.  You have to be your own detective to find these things.  It really won't come up on a blood test, nor do doctors really know about all these interactions.  They know how to give you a pill to fix a problem or set a fractured bone.  In reality, much of our modern diseases can be reversed by cutting out all processed foods, grains, soy and dairy.  Pesticides also affect many people, so eating at least partially organic can lessen that load.  Once your kidneys and liver have rid themselves of the sludge they've been filtering, you start to feel better.  Getting back to basics with real, whole food, quality meats and healthy fats (butter & coconut oil) can be the only prescription you need!  I sure wish I'd known about all this 40 yrs ago!  Better late than never!

Debbie

[cristiana]

I second deb_rn's suggestion of oats (even those that are pure oats, deemed to be uncontaminated by gluten).  Not a problem for most celiacs but I have had your symptoms on and off for a few days and I have just realised that a new shop bought  gluten free cake I'd been eating uses oat flour.  It may be sheer coincidence but I don't normally go anywhere near oats because in the past they gave me stomach ache.  Worth putting on a trial elimination list perhaps?

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[Beverage]

Hi there. Could be something else going on. I was diagnosed with Celiac's almost 2 years ago, started feeling a lot better after a few months of going gluten free ... dropped 30 lbs, sense of smell returned, could breathe through nose again, lots of improvement, serious mood improvement. Then slowly it seemed I was going backwards, lots of aches, thyroid problems, hair loss, sense of smell gone again, depressed, headaches which are very unusual for me. Then I got severe case of seborrheic dermatitis on my scalp and back of neck, which set of a real fun set of hives every night from the onslaught to my immune system.  Regular doc no help at all, looked at me like I had 2 heads when I said the hives were connected to the dermatitis. Went to naturopath and he saw I had one very old big amalgam filling in my mouth still.  Got some anti fungal for the head, which is helping but this does not actually cure it, people with this fight it for a very long time. Went to dentist as he recommended and found that the tooth with the big amalgam filling is CRACKED. Lots of my symptoms not only follow those typical of Celiac's but actually even more of mercury poisoning.  Getting this sucker removed in 2 weeks! And have appointment just before the dentist with the naturopath to get some nutritional support to help my body get rid of the poison and deal with whatever more might get released from the removal.  Can't wait! Talked to another Celiac friend, and she went through the same thing (years before I knew her so I didn't know about it), and did not feel better until she got all her old amalgam removed, now she feels great.

[deb-rn]

Those metals can cause a bunch of problems.  I'm thinking that could be another part of my persistent pain as well.  There are 2 schools of thought regarding removing the fillings.  One is... if it's not cracked, leave it alone.  The other is to have a specialized Biologic Dentist remove them all.  I guess it's important to have a "dam" in your mouth to prevent the busted up filling from going down your throat or touching the mucus membranes.  So much to learn, eh?  Did you know that the incidence of tooth decay exploded after WW I, I believe it was, when flour and sugar were no longer rationed?  The increased carb intake from cake and cookies made a lot of other things more prevalent about that time too, like MS, Schizophrenia etc.  So many diseases connected to what we ingest... and yes, we ingest little bits of the metal in our mouths every day!  Teflon pans are another big source of contamination!  We stopped using them some years ago.  Cast iron only here now.  The new ceramic ones are OK too, I guess.

Debbie

[Gemini]

23 hours ago, Beverage said:

Hi there. Could be something else going on. I was diagnosed with Celiac's almost 2 years ago, started feeling a lot better after a few months of going gluten free ... dropped 30 lbs, sense of smell returned, could breathe through nose again, lots of improvement, serious mood improvement. Then slowly it seemed I was going backwards, lots of aches, thyroid problems, hair loss, sense of smell gone again, depressed, headaches which are very unusual for me. Then I got severe case of seborrheic dermatitis on my scalp and back of neck, which set of a real fun set of hives every night from the onslaught to my immune system.  Regular doc no help at all, looked at me like I had 2 heads when I said the hives were connected to the dermatitis. Went to naturopath and he saw I had one very old big amalgam filling in my mouth still.  Got some anti fungal for the head, which is helping but this does not actually cure it, people with this fight it for a very long time. Went to dentist as he recommended and found that the tooth with the big amalgam filling is CRACKED. Lots of my symptoms not only follow those typical of Celiac's but actually even more of mercury poisoning.  Getting this sucker removed in 2 weeks! And have appointment just before the dentist with the naturopath to get some nutritional support to help my body get rid of the poison and deal with whatever more might get released from the removal.  Can't wait! Talked to another Celiac friend, and she went through the same thing (years before I knew her so I didn't know about it), and did not feel better until she got all her old amalgam removed, now she feels great.

The whole scare thing over amalgam fillings is really not true.  If someone suspects they have mercury toxicity from a cracked filling, then they can test for that.  That's what any reputable doctor would do.  Find out if you actually have a problem and then they can do chelation therapy to remove heavy metals.  It is very rare to actually have a problem and it's highly doubtful that it comes from fillings.  If a dentist or naturopath is telling you that you HAVE TO remove those fillings because it can cause health problems, then they should be testing you for it and not scaring you into spending money on replacing them.

To the OP.......if you have been diagnosed with Hashi's thyroid disease, then you need hormone replacement for it.  Any doctor who says you do not need to do so, is not helping you.  Your symptoms are those of someone with under active thyroid disease who is not being treated.  I would find another doctor.  You are far too young to feel this way if you are healing from Celiac.  I have Hashi's myself and have had it for almost 30 years...it took awhile to find a doc who knew what she was doing.  Most mainstream doctors under treat thyroid disease so people suffer.

[Beverage]

Yup, did the test. I have mercury toxicity.  The amalgam is CRACKED as I said, also a fine crack in the tooth itself.  So unless it's coming from some other source (no I rarely eat tuna or other typical sources), then I'm gonna bet it's the tooth.

You're right about the low thyroid.  I have been diagnosed with it, and am being treated for it.  The synthetic thyroid caused me too many side effects even at super low dose, so now I am taking nutrients that support the thyroid and having some improvement. With so many symptoms overlapping, it's hard to know what's what until the amalgam is gone.

Traditional doc tested thyroid and because TSH was in the range, although just barely, said she would not treat.  Naturopath did the full thyroid panel and T3 was very very low. Also tested for Hashi's...phew, do not have it.  I'm sorry you do have that, it sounds like a real challenge.

For white_star, I offered this an example of some other problem that can have symptoms that overlap with something else and can go undiagnosed until something worse happens.  So, do not rule out some other issue and from my experience of total frustration with traditional docs (unless you have one that is more knowledgeable and whole-body thinking), I'd suggest finding a good naturopath experienced with Celiac's.  Check your insurance, mine covers it just the same as a traditional doc, the naturopath I chose is in-network.  My insurance sucks in general, but it does cover it, I pay $20 copay per visit, but non-prescription is out of pocket.  I'd rather be taking that kind of stuff than prescription drugs which are not covered by the FDA gluten disclosure requirements.  I've gotten rid of all prescription drugs except half a pill of the lowest dose blood pressure med.   I'm 60 and hope to get off that totally.

13 days til adios to my amalgam!!!  yay!

[Gemini]

So, I take it you will be doing chelation therapy?  If you have mercury toxicity proven by valid medical testing, then that should be mandatory.  It won't improve just by removing the filling.

I prefer an MD with a functional medicine practice.  They seem to have a good balance between traditional and alternative medicine.  I think there are far more questionable naturopaths than good ones who you can trust to do things right.  Same with MD's too but at least they have a solid medical education.  I get what you are saying but have learned you have to be careful with the more alternative people. I like people who think outside the box but not too far out in left field. It's a hard balance finding the right people.  I have a great thyroid MD who treats  not only with blood work but symptom suppression.  There is no other way to do thyroid. If you do not have Hashi's, then you can probably get away with supplements for thyroid support. It may also take longer than the 2 years you have been gluten-free. Thyroid can take a very long time to straighten out after going gluten-free. You also mentioned hives......hives are somewhat common with people who have thyroid disease. It can be directly from an unbalanced thyroid. It is unreal how many body functions depend so heavily on the thyroid gland.....the gland that so many doctors ignore the function of.

I hope you find relief when you get your tooth fixed. I just know too many people who did the same thing, had all their fillings replaced and it made absolutely no difference to their health.

[Beverage]

Thanks, Gemini. I don't know what the ND has planned for me yet, appointment is next week.  I had a MD functional guy, loved him but the insurance hardly covered anything with him because he was out of network, and I got laid off and cannot handle that expense.  Tried a few other docs and could not find anybody that wasn't old school, so ended up the ND route, but these guys are not the wonky types that have you doing cleanses at the drop of a hat.  They do sometimes prescribe traditional meds if necessary, I just have a lot of side effects from everything we've tried anyway.  Yes, hives can be so fun.  I test off the charts for fungus in the allergy skin testing.  Whenever I get something going with that, the hives really give me a hard time.  One time was from athlete's foot thanks to my boyfriend bringing it home from the gym by not wearing foot protection in the shower. Didn't sleep anymore than 1-2 hours a night for 6 months, and had to keep going at a 50-60 hour a week job.  Another time was when I broke into the kitchen wall when we were remodeling to get a face full of fine black mold.  So now it's the scalp thing.  Fungus and mold are not my friend.

[deb-rn]

I hear you about medication side effects!  I don't tolerate the standard medications either.  I really don't have a choice but supplements... I've even ended up in ER with  THOSE!!  My system is damaged and adding more for it to filter out is never good for me.  We don't have a lot of doctor options here... I suppose in bigger cities there are more... just not here!  Supporting your system's natural defenses just seems to make more sense anyway than putting a medication "bandaid" on everything!  We have the capacity to heal, but in order to do so, we have to stop putting in things that just muck up the waters!

Debbie