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2.5 Yrs After Diagnosis & Need Help On Symptoms

carpermi

By carpermi
in Coping with Celiac Disease

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carpermi Newbie
carpermi
Posted

I literally feel like I cannot do this any more. Since diagnosis I still am struggling. Last year I was so sick. Endoscopy shows intestine healed. Diagnosed supposedly with chronic ebv last fall but not all doctors by it. Did everything right and didn't get better. Gallbladder removed this April. Was finally starting to and tanked 2 weeks ago. I do not eat out any where and gluten never in my home. 2 weeks ago I changed my diet to just fresh fruit, veggies, chicken and eggs (and coffee). 4 days in all my symptoms from last fall came back. I went off nightshades and corn (day 3 had a huge bowl of air pop popcorn) thinking maybe that was the issues but a week later still getting worse. Realized my hair products have gluten and Burt bee Chapstick has cross contamination so I cut all those out 2 days ago. Could a diet change like this make me even more sensitive (I am so sensitive)? I could barely function this last year and so scared to go back. My blood work all comes back normal. Since my lymph nodes have been so involved they sent me to an oncologist and all looks fine in the CT scan. Rheumatologist doesn't see any sign of other autoimmune. Could all this really be some random gluten I am getting? Here are my symptoms literally one day I was doing great and the next day woke up with all this. Had only had grilled chicken, eggs, salad, tomatoes, potatoes and popcorn the 2 days prior at my home. My Gi is not totally jacked up like when I believe I have gotten gluten.

Irritability

Muscle weakness

Panic feelings

Stiff neck

Foggy brain

Stomach cramps

Rapid heartbeat

Burning in face & crown of neck

Excessive thirst

Shaky hands

Itchy head

Itchy throat

Itchy joints

Nausea

Dizzy

Ear pain

Exhaustion after taking a shower (heat)

Instant hard time regulating stress

Swollen lymph nodes

Shortness of breath

Shoulders feel like when you get the flu (hate hate hate that feeling between my shoulder blades)

Any thoughts I would be thankful.

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cyclinglady Grand Master
cyclinglady
Posted

I am sorry that you are sick!

When you said all your blood tests have come back normal, does that include a celiac antibodies? I was glutened two months ago and am still recovering. I had my GI test my celiac antibodies and they were high! I am still trying to determine what glutened me! I am recovering, but in the meantime, I had pain, no matter what I ate. I stuck to easy-to-digest foods, took enzymes and just waited!

If you are sure it is not related to gluten, then perhaps you should look at other autoimmune diseases. Is your thyroid okay? Many of the symptoms you describe could be attributed to being hyperthyroid. But I am not a doctor.

I hope you find answers!

carpermi Newbie
carpermi
Posted
  • Author

Thank you cycleladying for responding. Yes blood work for celiac negative too. And nothing indicates thyroid, which I agree you would think that is the case. Literally don't know what to do. If I was getting trace amounts of gluten would it show in the blood work? I thought they weren't reliable? Again. Thank you. This makes you feel crazy. I am at the point thinking I can eat no food but you made the comment to gentle foods and everything I am eating is hard to digest.

cyclinglady Grand Master
cyclinglady
Posted

Did you get copies of the celiac blood tests results? Were they they same tests run when you were first diagnosed? Here is the complete list:

-Tissue Transglutaminase (tTG) IgA and (tTG) IgG

-Deamidated Gliadin Peptide (DGP) IgA and (DGP) IgG

-EMA IgA

-total serum IgA and IgG (control test)

-AGA IGA and AGA IgG - older and less reliable tests largely replace by the DGP tests

-endoscopic biopsy - make sure at least 6 samples are taken

(Source: NVSMOM -- )

I am proving this list because I test negative on the TTG Tests. I only have had a positive on the DGP IGA yet my biopsy at the time of my diagnosis showed moderate to severe damage. As I stated before, my last celiac panel after a recent glutening had only the DGP showing positve confirming that I was indeed glutened. I have narrowed down the possible culprits but am not exactly sure. Who knows? I am not going to test the products / medications that I suspect!

It is important to make sure the entire celiac panel is run! My provider only authorizes the TTG and an IGA deficiency test. Only a GI doc can order the complete panel. I had to see my GP and then get a referral to a GI just to get the entire celiac panel. (I have new health insurance).

squirmingitch Veteran
squirmingitch
Posted

Bone broth hon. It will help you heal & it's very gentle on the tummy. Here's how:

Open Original Shared Link

lindalee Enthusiast
lindalee
Posted

I had an issue with a swollen gland (groin) and started taking unflavored gelatin - I just drink it in a cup of hot green tea with honey and lemon.  It gave me energy and the gland issue went away.  Last Sunday I ate some steamed crabs(no beer) and when I got home had an immediate back ache then the normal achy stuff and then the gland again.  have been doing Epsom baths to remove the toxins and have a massage scheduled next week-she does an easy immune system massage that helps a lot. 

 

We are whole and healthy.

Blessings  Lee

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