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What Does This Sound Like To You?

mltjq

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mltjq Newbie
mltjq
Posted

8 months of out of nowhere neuro symptoms and digestion symptoms have led me in and out of doctors offices and finally to my hunch that this is related to gluten - oxalates.

Foods that bother me stomachwise and neurologically among other physical ways (interstitial cystitis, exhaustion, rapid/hard heart beat, eye floater in one eye?, feeling electricity in my blood (immune system on alert?, muscle twitches).

spinach

nuts

barley

oatmeal

bread

potatoes

chocolate

refried beans

navy beans

black eyed peas

sugary anything

I had been working out and eating pure (veggies, fish, chicken) for about 10 months and then went on vacation and splurged on bagels, girl scout cookies, bread, pizza, etc...) once we got back in town and I wasn't feeling good I thought I had a virus. I was exhausted and I thought it was from being at Disney. A few weeks went by and while at the gym my heart started racing. Several doctor visits and every blood test under the sun and they couldn't figure out what was wrong. Tried to put me on an SSRI and anianxiety med but I refused feeling this was something else. Found a holistic, medical doctor that ran more tests....

saliva showed that my cortisol was low and progesterone was nill !

Vit D was next to nothing

Whatever eggs are was next to nothing (though I eat egg whites daily).

She started me on B12 shots and strong neutraceuticals (vitamins from a pharmacy) and this helped a LOT.

A rocky mtn fever antibody test came back slightly elevated. I have never had a rash or a tick??? No swelling, no painful joints.

Could the antibody test be picking up something else autoimmune related? I want to say she said it was Ig something??

I did 3 weeks of antibiotic/Doxycycline for the mysterious rocky mtn spotted fever. Experienced stomach upsets after that.

Should I do some type of probiotic?

Should I not be taking so much vit C? (she has me on a lot to strengthen my adrenals)

I was retested for RMSFver and also for gluten sensitivity last week. Dont have those blood tests back yet. BUT feeling a lot better that the gluten is out of my diet.

Another question....if dishwasher washes kitchen stuff at a high temp do I still need to buy my own set of kitchen misc?

What is the relationship between the adrenal glands and autoimmune disorders?

Does stress make your gluten problems worse?

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ShayFL Enthusiast
ShayFL
Posted

Stress makes everything worse. :(

You should be tested for Lyme as the spotted fever could be a co-infection. IGENX is the lab you want for Lyme.

You CERTAINLY should be on probiotics with taking Abx. Lots of Acidophilus. And not just yogurt. You need more than that. A supplement.

How much C are you on?

mltjq Newbie
mltjq
Posted
  • Author

VIt C -I am on about 1700-2000 mg daily

Mother of Jibril Enthusiast
Mother of Jibril
Posted

From what I've read, you can't really overdose on Vitamin C. It's a water soluble vitamin and easy for your body to excrete if you're taking too much (although really high doses can cause diarrhea).

A Vitamin D deficiency can also do all kinds of horrible things to your body. Check out this link:

Open Original Shared Link

It's safe to take at least 2000iu every day, but when you're really deficient you can start with a higher dose... 4,000 or 5,000iu. Then retest to make sure your levels are appropriate.

Getting too much or too little cortisol doesn't cause autoimmune disorders, but it does make you feel worse. Also, if you have a genetic predisposition to one or more autoimmune disorders, stress and a poor diet can really set them off. :angry:

If you're sensitive to gluten and haven't been eating it for several months (like you were... eating mostly meat and vegetables), binging on bagels, pizza, etc... is a bad idea! I've read other posts where people had to go to the ER because their symptoms got so bad.

  • 4 weeks later...
mltjq Newbie
mltjq
Posted
  • Author

Okay - I am still desperate for any type of help. So I am posting this out there for any and all ideas. Fortunately I have a super supportive doctor who'll run any type of test I want run.

RE: the Lyme.

The positive rocky mtn spotted fever was just barely positive. It's an antibody test and she thought it came back barely positive because I had once had MONO in my life. She thought if it had been true rmsf than it would have been much higher. Lyme came back neg both times but I realize that test is wacko like that. I have no tiredness though.

My most annoying thing is feeling like my immune system is on alert. Could MSG be doing this? I also am allergic to eggs, tree nuts, cheddar chz, milk. gluten which had been in my diet that entire time (along w/ MSG unknowingly).

Anyone else with MSG problems? harsh on your nerves?

When nerves are on alert things are louder, smellier, adrenaline hurts, cortisol upon waking hurts :(

Doc wants to do a liver cleanse?

Also thinking leaky gut (maybe MSG sneaking through...the concentration is higher than if I didn't have leaky gut?) because of so many vitamin deficiencies.

Copper was very deficient.

Trying to start SCD diet as well as going MSG free and am so frustrated I just cant figure out what to eat and then I start feeling hypoglycemic and panicky :(

I miss my healthy self :( I know it's only been 10 months and for many of you it's a life time and there are worse things to have. I am a mom of 3 little ones and they are worried about me :( because I am not the same.

nutrifoodie Apprentice
nutrifoodie
Posted
Okay - I am still desperate for any type of help. So I am posting this out there for any and all ideas. Fortunately I have a super supportive doctor who'll run any type of test I want run.

RE: the Lyme.

The positive rocky mtn spotted fever was just barely positive. It's an antibody test and she thought it came back barely positive because I had once had MONO in my life. She thought if it had been true rmsf than it would have been much higher. Lyme came back neg both times but I realize that test is wacko like that. I have no tiredness though.

My most annoying thing is feeling like my immune system is on alert. Could MSG be doing this? I also am allergic to eggs, tree nuts, cheddar chz, milk. gluten which had been in my diet that entire time (along w/ MSG unknowingly).

Anyone else with MSG problems? harsh on your nerves?

When nerves are on alert things are louder, smellier, adrenaline hurts, cortisol upon waking hurts :(

Doc wants to do a liver cleanse?

Also thinking leaky gut (maybe MSG sneaking through...the concentration is higher than if I didn't have leaky gut?) because of so many vitamin deficiencies.

Copper was very deficient.

Trying to start SCD diet as well as going MSG free and am so frustrated I just cant figure out what to eat and then I start feeling hypoglycemic and panicky :(

I miss my healthy self :( I know it's only been 10 months and for many of you it's a life time and there are worse things to have. I am a mom of 3 little ones and they are worried about me :( because I am not the same.

MSG (monosodium glutamate) is a Nuerotoxin. Of course it causes problems! No one should have any amount of MSG. There are also 27 or so other 'names' that MSG hides under.. so be sure to educate yourself and READ those labels!

check out these links:

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

Hope this helps :)

Actually, in your situation (since you seem to be having a myriad of problems which you can't place to any specific thing) I would advise CUTTING OUT ALL processed foods. Eat from scratch B)

Mother of Jibril Enthusiast
Mother of Jibril
Posted
Copper was very deficient.

Trying to start SCD diet as well as going MSG free and am so frustrated I just cant figure out what to eat and then I start feeling hypoglycemic and panicky :(

The copper deficiency could explain a LOT. Check out this case study:

Open Original Shared Link

When you start taking a lot of foods out of your diet, you really do need to plan ahead so you don't get to that hypoglycemic stage :( I keep little bags of snacks around the house... nuts, dried fruit, pumpkin seeds, chocolate... so I can quickly and safely satisfy my hunger between meals. My new favorite is nut mixtures by Sahale. Delicious! :P The "Sing Buri" cashews have wheat (soy sauce), but all the other flavors are wheat and dairy free. Hardboiled eggs are great if you can have eggs.

I'm sure money is tight with three kids, but you're absolutely right that they need their mom back :) You're worth the investment in some high-quality, satisfying meals and snacks. Build a little stockpile in one cabinet so you have a safe place to grab something quickly.

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      High DGP-A with normal IGA

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    • captaincrab55
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    • rei.b
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      By rei.b · Posted

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    • knitty kitty
      High DGP-A with normal IGA

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      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long?   DGP IgG antibodies are produced in response to a partial gluten molecule.  This is different than what tissue transglutaminase antibodies are  produced in response to.   TTg IgA antibodies are produced in the intestines in response to gluten.  The tTg IgA antibodies attack our own cells because a structural component in our cell membranes resembles a part of gluten.  There's a correlation between the level of intestinal damage with the level of tTg antibodies produced.  You are not producing a high number of tTg IgA antibodies, so your level of tissue damage in your intestines is not very bad.  Be thankful.   There may be reasons why you are not producing a high quantity of tTg IgA antibodies.  Consuming ten grams or more of gluten a day for two weeks to two months before blood tests are done is required to get sufficient antibody production and damage to the intestines.  Some undiagnosed people tend to subconsciously avoid lots of gluten.  Cookies and cakes do not contain as much gluten as artisan breads and thick chewy pizza crust.  Anemia, diabetes and thiamine deficiency can affect IgA antibody production as well.   Do you carry genes for Celiac?  They frequently go along with EDS.
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      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
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