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Not Sure What To Do.

kingman

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kingman Rookie
kingman
Posted

I was diagnosed with Celiac as an infant. I had seemingly built up a tolerance but starting in my 20's things started getting much worse. I am now 40.

 

I have dermatitis on my face, terrible inflammation in my joints and in my bowels on the right side.

 

Muscle cramps and tremors, 

temp runs low by one or two degrees

night sweats

swollen lymph nodes (on the right side of my neck)

anxiety

constant fatigue

 

If I have an acute attack I get a blinding headache with nausea for a day and can't get warm. Then I have to suffer for weeks until things calm down.

 

I went to a doc a few months ago and he said my tests are normal but that is likely because I am very careful about consuming gluten and it won't show up.

 

I have had utra sounds, MRI's, colonoscopies, and some other digestion tests and no problems show up.

 

Currently there is no dairy or corn in my diet.

 

I have considered that I am malnourished or have vitamin deficiencies but I don't know what to take as it is hard to find supplements that don't contain allergens.

 

Please help if you have suggestions. This is ruining my life.

 

 

 

 

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cyclinglady Grand Master
cyclinglady
Posted

I am not a doctor, but I am assuming that your doctors are looking beyond celiac and the gastrointestinal tract? Have they ruled out other diseases like mono, lymphoma, hormonal imbalances (e.g thyroid, perimenopausal), etc.?

kingman Rookie
kingman
Posted
  • Author

My thyroid has been tested several times and I have had gallbladder tests.

 

I have also seen a rheumatologist to no avail.

 

I am a man so menopause should not be an issue. lol

cyclinglady Grand Master
cyclinglady
Posted

Sorry, I am at a loss. So, no cancer, mono, travels outside of the country? Have you read up in the forum about Mass Cell Activation Disorder?

Perhaps others on this forum will be able to help! (Not that we diagnosis anyone but someone may have had comparable symptoms/issues.)

kingman Rookie
kingman
Posted
  • Author

No travels outside US.

It's been going on for years. If it were cancer I would be dead already.

beth01 Enthusiast
beth01
Posted

Have you been keeping a food diary?  Maybe you have other food intolerances.

 

Have you been gluten free from diagnosis?  I don't understand what you mean about building up a tolerance.  Not being 100% gluten free could cause your symptoms.

kingman Rookie
kingman
Posted
  • Author

My diagnosis was at the age of 3. There wasn't a lot of information and the consensus was that I would grow out of it. So I have not been gluten free from diagnosis.

 

I didn't have a lot of symptoms in later childhood so I ate whatever. I had bouts of psoriasis that were pretty bad and some other issues but never made the connection.

 

That's what I meant about tolerance. It's not really true. Celiac is celiac and you don't grow out of it.

 

I have not been keeping a diary but my diet is very limited. I have eliminated most everything from my diet for long periods of time but the only improvement has seemed to be a little less bloating and my psoriasis to calm down.

 

That's why I am not sure what to do. The last GI said all my tests were negative but I had been following a gluten free diet for years prior to that test so it shouldn't show anything.

 

The rheumatologist said I had a positive RA factor but said the joints he x-rayed were ok and gave me tramadol and nsaids.

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cyclinglady Grand Master
cyclinglady
Posted

You said that have a limited diet. What are you eating? What are you allergic or intolerant to?

skullgrl Rookie
skullgrl
Posted

Make sure they are monitoring for psoriatic arthritis, if you have psoriasis.  

GottaSki Mentor
GottaSki
Posted

My diagnosis was at the age of 3. There wasn't a lot of information and the consensus was that I would grow out of it. So I have not been gluten free from diagnosis.

 

I didn't have a lot of symptoms in later childhood so I ate whatever. I had bouts of psoriasis that were pretty bad and some other issues but never made the connection.

 

That's what I meant about tolerance. It's not really true. Celiac is celiac and you don't grow out of it.

 

I have not been keeping a diary but my diet is very limited. I have eliminated most everything from my diet for long periods of time but the only improvement has seemed to be a little less bloating and my psoriasis to calm down.

 

That's why I am not sure what to do. The last GI said all my tests were negative but I had been following a gluten free diet for years prior to that test so it shouldn't show anything.

 

The rheumatologist said I had a positive RA factor but said the joints he x-rayed were ok and gave me tramadol and nsaid

 

Have you had an endoscopy?

Were any other Rheumy tests positive -- CRP, ESR, ANA, etc?

Have you had nutrients tested?  

Have you had allergy testing both blood and skin prick?

Do you have any reactions to environment like heat? cold? exercise? chemicals? perfumes? or exhaust, etc?

bartfull Rising Star
bartfull
Posted

Kingman, if there is a Shopko in your area, they have a line of vitamins called Shopko Naturals that are gluten,corn,soy, dairy, salt, yeast, preservative, and artificial color free. I have checked but although you can buy some stuff from Shopko online, they don't sell these online. I wish they did so folks who live where there is no Shopko could get them. :(

kingman Rookie
kingman
Posted
  • Author

Have you had an endoscopy?

Were any other Rheumy tests positive -- CRP, ESR, ANA, etc?

Have you had nutrients tested?

Have you had allergy testing both blood and skin prick?

Do you have any reactions to environment like heat? cold? exercise? chemicals? perfumes? or exhaust, etc?

"Light" positive ANA. Folic acid and D are low.

No endoscopy as of yet.

I have not gone through the other allergy testing either.

I did have a hida scan to check my gallbladder since the bulk of my abdominal swelling is right under my ribs. It's bad enough that I feel the swelling into my back.

GottaSki Mentor
GottaSki
Posted

Ok.

So you are now 40.

Would you say your 'flu' type symptoms have escalated over the past decade?

kingman Rookie
kingman
Posted
  • Author

Much worse over the past 5 years even though I live much healthier than before.

I thought maybe thyroid because my brother has Graves' disease. Tested normal.

GottaSki Mentor
GottaSki
Posted

Much worse over the past 5 years even though I live much healthier than before.

I thought maybe thyroid because my brother has Graves' disease. Tested normal.

Sounds familiar.

When you mention removing foods...have you done as strict elimination?

If not, I would try removing all high histamines first for at least a week, a month is better.

If that doesn't work...then remove high lectins (this is the most restrictive).

SMRI Collaborator
SMRI
Posted

Have they run an immune panel, IgA, IgG (and subclasses), IgM, IgE, etc.?   A lot of your symptoms could be attributed to immune deficiency as well.  I think it would be wise to go to a clinic like Mayo and have doctors across many specialties look at you at the same time and see what they can piece together.  They see all of the very weird things so it's possible they will know what is what.

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      how much gluten do I need to eat before blood tests?

      By trents · Posted

      I might suggest you consider buckwheat groats. https://www.amazon.com/Anthonys-Organic-Hulled-Buckwheat-Groats/dp/B0D15QDVW7/ref=sr_1_4_pp?crid=GOFG11A8ZUMU&dib=eyJ2IjoiMSJ9.bk-hCrXgLpHqKS8QJnfKJLKbKzm2BS9tIFv3P9HjJ5swL1-02C3V819UZ845_kAwnxTUM8Qa69hKl0DfHAucO827k_rh7ZclIOPtAA9KjvEEYtaeUV06FJQyCoi5dwcfXRt8dx3cJ6ctEn2VIPaaFd0nOye2TkASgSRtdtKgvXEEXknFVYURBjXen1Nc7EtAlJyJbU8EhB89ElCGFPRavEQkTFHv9V2Zh1EMAPRno7UajBpLCQ-1JfC5jKUyzfgsf7jN5L6yfZSgjhnwEbg6KKwWrKeghga8W_CAhEEw9N0.eDBrhYWsjgEFud6ZE03iun0-AEaGfNS1q4ILLjZz7Fs&dib_tag=se&keywords=buckwheat%2Bgroats&qid=1769980587&s=grocery&sprefix=buchwheat%2Bgroats%2Cgrocery%2C249&sr=1-4&th=1 Takes about 10 minutes to cook. Incidentally, I don't like quinoa either. Reminds me and smells to me like wet grass seed. When its not washed before cooking it makes me ill because of saponins in the seed coat. Yes, it can be difficult to get much dietary calcium without dairy. But in many cases, it's not the amount of calcium in the diet that is the problem but the poor uptake of it. And too much calcium supplementation can interfere with the absorption of vitamins and minerals in general because it raises gut pH.
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    • catnapt
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