Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

So Confused.....


mltjq

Recommended Posts

mltjq Newbie

Okay - I am still desperate for any type of help. I am going to put all this out there for any and all ideas.

This all started out of nowhere last Feb. Returned from Disney with a stomach virus that lasted 2 weeks. Had gas constantly for a month after that. The 10 months prior to that I had lost 70 pounds working out 2-3 hours a day and eating (what I thought) was good. I have no realized that one of the shakes (Ultramet Light by Champion Nutrition) had MSG in it. I also had been eating a ton of sashimi during this time for protein (parasite? metals?).

The entire two weeks at Disney I gorged on bagels and such...after not having an ounce of stuff like that for almost a year. (gluten?)Feb 14th I ate a box of tagalongs/girl scout cookies with the kids thinking....I had been out of the gym for my first break in a year.

Feb18th I had a panic attack?heart racing at the gym. I had been working out and was abnormally tired still from that stomach virus. The night before I had met witha personal trainer that specialized in nutrition for body builders and she encouraged me to eat oatmeal. The night before I had had barley. Went to doctor and bloodwork was normal, CT scan of heart was normal, sono of veins was normal, Xray of lungs was normal.

The last week of Feb I felt like my brain couldn't think. I kept telling my husband that my brain was broken. My body felt afraid/fear though I had nothing to be afraid of...wasn't thinking fear but felt "fright!". Things were Louder. Body had startle reflex. Things were smellier (suffocatingly smelly). Often just shook for no reason like I was freezing but it wasn't cold. Food sensitivities. Hives. Feeling like my heart was going to stop beating or it was beating too hard or too fast (like when trying to fall asleep it felt like I was running on a treadmill).

Doctors kept encouraging me to take anxiety pills and SSRI's. Tried anxiety medication XANAX and it made me stay awake for 2 nights. Doctor wouldn't believe that this was true. Tried it again and stayed awake for 2 nights again. Hydroxyzine (an antihistamine finally helped). Didn't think this was depression so didn't take the SSRI's. Kept thinking that those might in fact help (bandaid) but weren't solving what was wrong.

Continued taking hydroxyzine (1/5'th of a teaspoon...any more was too strong) or 1/2 teaspoon of baby benedryl would help (but both make me feel SUPER droggy the next day to day and 1/2 afterwards.

Went to a acupuncture girl who said something about a liver meridian. But I felt uncomfortable with her.

Then in a yoga position (pigeon) that opened up the liver - I burst out crying. Finally. I hadn't been able to even cry in months. (stress from all this?). Could this be something liver related?? is my liver not detoxing my body?

Met a compounding pharmacist who suggested I do a saliva test. Did that and it came back that I had low morning cortisol and practically no progesterone. He put me on Adrenal Support Vitamins. One of them has a bit of 5-HTP in it that does seem to help the lack of serotonin being produced in my gut.

He put me in contact with a holistic medical doctor. She ran all her tests.

Came back barely positive for rocky mtn spotted fever but she thought this was a false positive since it was antibody test and it could have jus tpicked up that I had had MONO in my life. I didn't know it at the time but it was also going around my gym. I could have had this and not known it last spring. Took 3 weeks of 2X day doxycycline as a precaution. Second follow up test came back clear. Lyme negative both times. We talked about Lyme and she's friends with a LLMD and decided that this wasn't lyme but "gut" related.

Blood test/Cell tests also showed D3 deficiency, copper deficiency, defeciency in the compund in eggs (though I was eating a ton of egg whites), some more deficiencies. Allergies to cow milk, egg, tree nuts, cheddar chz, gluten.

She put me on Vit D3, ton of vit C, n-acetyl cystein, Vit E,

This led us to diagnoses of leaky gut.

Her next step is to want to do a parasite cleanse and detox and some enzymes and a stool test (starting ASAP).

I started SCD this week (trying to atleast but failing miserably) to try and clear up Candida from a long list of life long puzzles that fit Candida (interstitial cystitis. frequent uti feeling but no bacteria but high wbc???, and more...). I end up not eating because I cant figure out what to eat and that makes me feel hypoglycemic and probably isn't good for the adrenals so that leads to a vicious cycle of increased adrenaline/cortisol and painful nerve endings/things too loud/too smelly.

I have been researching MSG (and it's many other names). I am trying to eliminate that. But didn't realize that boiled meat with veggies = hydrolyzed protein aka MSG. I have been poisoning myself. ACK!

Some incredibly smart girl on here mentioned methylation cycle. My doctor mentioned that too :)

Okay so am I overlooking anything else? anyone have any other directions to point me toward? My doctor is so awesome and open for all ideas.

Can anyone related with the nerve damage - like feeling?

Have had allergy type reactions to shrimp, potatoes, mushrooms, zithromycin, dry beans/soup. Was starting to feel better recently and drank a Kombucha (fermeted mushroom drink thinking the probiotics would help) and felt HORRIBLE since. (3 days ago). Today was accidentally MSG'd by frozen Birdseye veggies (asian mix). Dumb mistake.

Thank you for reading........

I know many of you have felt awful for a lot longer than I have. My 3 young kids miss me :( being myself. Their laughter and squeals which I should enjoy right now absolutely pierce my ears :(


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



ShayFL Enthusiast

Your adrenals sound completely shot (startle reflex and constant fear feeling) is a dead giveaway. Vitamins might not be enough. Ask about a very small physiologic dose of Hydrocortisone. This wouldnt be for life, just to let them heal. Ask your doctor.

Have they tested your thyroid? TSH, Free T4, Free T3 and both antibodies.

You sound pretty much like me 13 years ago.

I needed to rest my adrenals and supplement them to get them back on track. I also needed thyroid medication. B12. Iron (have them test your Ferritin if they have not already).

gluten-free was the final piece to the puzzle for me.

mltjq Newbie

Okay Shay so that is what my doctor originally thought.

So I started on B12 shots in Sept (one every 2-6 weeks as needed) and also she gaveme some cortisone. I took 1/2 of one a day (prescribed was 1/2 3 times a day) and it felt so strong to me. One day after I hd been taking them for about 2 weeks I took one with a sublingual B12 and I had a terrible niacin rush and my heart was thumping hard.

I wonder if it wasthe sublingual B12? if I should give the cortisone another chance.

The B12 shots do help.

Doc mentioned thyroid last visit. Hmm.. dh (dear husband) mentioned this too as I have no tolerance for cold anymore. We moved from Mi to Nc and I am complaining about the cold here and always shivery.

Thank you for your help. I'll let you all know how it turns out next week. This is such a puzzle.

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,129
    • Most Online (within 30 mins)
      7,748

    Raz
    Newest Member
    Raz
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      Welcome to the forum, @Kara S! Warrior bread is a grain free bread product. Google it. There are commercial mixes available, I believe, Youtube videos and many recipes. 
    • knitty kitty
      @Colleen H, I have had similar reactions and symptoms like yours.  I started following the low histamine Autoimmune Protocol diet developed by a doctor with Celiac Disease herself, Dr. Sarah Ballantyne.  Her book, The Paleo Approach, is very helpful in understanding what's going on in the body.   Not only do you have antibodies attacking the body, there are mast cells spreading histamine which causes inflammation.  Foods also contain histamine or act as histamine releasers.  Our bodies have difficulty clearing histamine if there's too much.  Following the low histamine AIP diet allows your body time to clear the excess histamine we're making as part of the autoimmune response, without adding in extra histamine from foods.  High histamine foods include eggs, processed foods and some citrus fruits.  The AIP diet allows meat and vegetables.  No processed meats like sausage, luncheon meats, ham, chicken nuggets, etc. No night shades (potatoes, tomatoes, peppers, eggplant).  No dairy.  No grains.  No rice.  No eggs.  No gluten-free processed foods like gluten free breads and cookies.  No nuts.  No expensive processed gluten-free foods.  Meat and vegetables.  Some fruit. Some fruit, like applesauce, contains high levels of fructose which can cause digestive upsets.  Fructose gets fermented by yeasts in the gastrointestinal tract.  This fermentation can cause gas, bloating and abdominal pain.   The AIP diet changes your microbiome.  Change what you eat and that changes which bacteria live in your gut.  By cutting out carbohydrates from grains and starchy veggies like potatoes, SIBO bacteria get starved out.  Fermenting yeasts get starved out, too.  Healthy bacteria repopulate the gut.   Thiamine Vitamin B 1 helps regulate gut bacteria.  Low thiamine can lead to SIBO and yeast infestation.  Mast cells release histamine more easily when they are low in Thiamine.  Anxiety, depression, and irritability are early symptoms of thiamine insufficiency.  A form of thiamine called Benfotiamine has been shown to promote intestinal healing.   Thiamine works with the seven other B vitamins.  They all need each other to function properly.   Other vitamins and minerals are needed, too.  Vitamin D helps calm and regulate the immune system. Thiamine is needed to turn Vitamin D into an active form.  Thiamine needs magnesium to make life sustaining enzymes.  Taking a B Complex and additional Benfotiamine is beneficial.  The B vitamins are water soluble, easily lost if we're not absorbing nutrients properly as with Celiac Disease.  Since blood tests for B vitamins are notoriously inaccurate, taking a B Complex, Benfotiamine, and magnesium Threonate, and looking for health improvements is a better way to see if you're insufficient.   I do hope you will give the low histamine AIP diet a try.  It really works.
    • Kara S
      Hello, my family is very new to Celiac Disease so forgive me for asking what Warrior Bread is and is there a recipe for it online?
    • jessicafreya
      I'd like to make tamales and wonder if anyone has recs for corn husks free of cross contact for a sensitive celiac little boy. Thks!
    • knitty kitty
      Just wanted to add that checking B12 and Vitamin D only is not going to give an accurate picture of vitamin deficiencies.   B12 Cobalamine needs the seven other B vitamins to work properly.   You can have vitamin deficiency symptoms before the B12 blood level changes to show deficiency.  You can have "normal" B12, but have deficiencies in other B vitamins like Thiamine and Niacin, for which there are no accurate tests. Take a B Complex supplement with all the B vitamins.  Take additional Thiamine B 1 in the form Benfotiamine which has been shown to promote intestinal healing.  Thiamine Mononitrate found in most vitamin supplements is not easy for the body to utilize.  What makes thiamine mononitrate not break down on the shelf also makes it hard for the body to absorb and utilize.  Thiamine and Niacin B 3 deficiency symptoms include anxiety, depression and irritability.  The brain uses more Thiamine than other organs.  Take the B Complex and Thiamine in the form Benfotiamine or TTFD (tetrahydrofurfuryl disulfide) and look for health improvements in the following weeks.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.