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What To Do Next?

hercules25

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hercules25 Apprentice
hercules25
Posted

14 years of being ill. I have had every test under the sun on every extremity and organ at least 2 times. I am seeking some similarities or advice or something. LOL

Symptoms (that I can think of) Fatigue, abdominal pains, nausea, neuro problems, random rapid heart beat, eye head aches, vision changed, tired, tired, tired, brain fog, sore muscles, muscles spams and so on. All MRI's negative.

These are my positive test:

ANA SCR ... Positive for SSA AB (Neg for lupus/Sjorden)

Vitamin B 43 H (Range 2.1-21.7)

My Albumin and Globulin were below the level of detection

Protein TOT 24H ... 153 (Range 501-100) range urine test and it was negative

Albumin and All my Globulins came back low, another Doctor said it must of been a lap error and a month later ran it again and they were all normal.

Total Protein.. 2.6 L (Range6.1-7.9)

Saccharomyces Cerevisiae

AB (ASCA) (IGG) 28.5 (This is high but not considered positive)

Saccharomyces Cerevisiae

AB (ASCA) (IGA) 45.3 (Anything over 25 here is positive)

Celiac Test, Colonoscopy (found inflammation where small intestines and colon meet), Endoscopy, Capsule Camera, MRIs, liver test, pancreas, girl organs, ALL Negative. My small intestines look good.My doctors are baffled. I accidentally consumed gluten and 36 hours later I was in the most abdominal pain ever and hanging with the latrine for the next week and a half. Even after I go gluten free my symptoms have gotten better but never totally gone. So I figure maybe I dont have gluten intolerance or it takes much longer to repair. I need direction, help, advice before I loose it.

Awaiting a genetic test result...

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gluten free overseas Apprentice
gluten free overseas
Posted

Did you ever try entrolab (www.entrolab.com)--they can test for candida/yeast. People with candida have to avoid gluten too. Did you already get tested for that?

I read somewhere that it's possible to be sensitive to gluten even if your intestines aren't damaged.

Well, if gluten makes you feel like junk, maybe just avoid it and see how it goes.

Skylark Collaborator
Skylark
Posted

I don't see celiac bloodwork on your list of tests. Did you get celiac disease tests before you went off gluten? Also, have you had a thyroid panel? That would cause the fatigue, brain fog, and I was getting occasional rapid heartbeat with hypothyroidism.

Celiac can take a while to repair. Fasano says gluten intolerance is pretty quick.

You may have other intolerances like soy, dairy, lectins (high in legumes, nightshades, and grains), or food chemicals like salicylates or amino acids. There are a couple diets to try if you are reasonably certain you're dealing with intolerance and not allergy. I'd consider FAILSAFE Open Original Shared Link or Specific Carbohydrate Diet Open Original Shared Link

I'm thinking SCD for the candida issues, and FAILSAFE because of all of your fog and fatigue. It's hard to tell which might help, or whether you might need some combination of the two. Anyway, there is plenty of reading material and stuff to think about on those websites.

pain*in*my*gut Apprentice
pain*in*my*gut
Posted

14 years of being ill. I have had every test under the sun on every extremity and organ at least 2 times. I am seeking some similarities or advice or something. LOL

Symptoms (that I can think of) Fatigue, abdominal pains, nausea, neuro problems, random rapid heart beat, eye head aches, vision changed, tired, tired, tired, brain fog, sore muscles, muscles spams and so on. All MRI's negative.

These are my positive test:

ANA SCR ... Positive for SSA AB (Neg for lupus/Sjorden)

Vitamin B 43 H (Range 2.1-21.7)

My Albumin and Globulin were below the level of detection

Protein TOT 24H ... 153 (Range 501-100) range urine test and it was negative

Albumin and All my Globulins came back low, another Doctor said it must of been a lap error and a month later ran it again and they were all normal.

Total Protein.. 2.6 L (Range6.1-7.9)

Saccharomyces Cerevisiae

AB (ASCA) (IGG) 28.5 (This is high but not considered positive)

Saccharomyces Cerevisiae

AB (ASCA) (IGA) 45.3 (Anything over 25 here is positive)

Celiac Test, Colonoscopy (found inflammation where small intestines and colon meet), Endoscopy, Capsule Camera, MRIs, liver test, pancreas, girl organs, ALL Negative. My small intestines look good.My doctors are baffled. I accidentally consumed gluten and 36 hours later I was in the most abdominal pain ever and hanging with the latrine for the next week and a half. Even after I go gluten free my symptoms have gotten better but never totally gone. So I figure maybe I dont have gluten intolerance or it takes much longer to repair. I need direction, help, advice before I loose it.

Awaiting a genetic test result...

When you mention "Celiac Test" do you mean biopsy or blood work? False negatives are possible on both. Also, if they found inflamation in your lower small intestine, what do they attribute that to? It sounds like you could have some kind of inflamatory bowel disease for sure (maybe made worse by a gluten intolerance?), especially with the positive SSA! Are you seeing a rheumy or gastro (or both)?

I about fell out of my chair when I saw that you have a positive ASCA blood test!! I tested very positive for this as well several years ago, but I don't have Crohn's disease (as far as I know...I am having a scope on friday)! The docs are perplexed about this random ASCA result...makes me think it is somehow related to celiac. I have all of your symptoms as well!

hercules25 Apprentice
hercules25
Posted
  • Author

When you mention "Celiac Test" do you mean biopsy or blood work? False negatives are possible on both. Also, if they found inflamation in your lower small intestine, what do they attribute that to? It sounds like you could have some kind of inflamatory bowel disease for sure (maybe made worse by a gluten intolerance?), especially with the positive SSA! Are you seeing a rheumy or gastro (or both)?

I about fell out of my chair when I saw that you have a positive ASCA blood test!! I tested very positive for this as well several years ago, but I don't have Crohn's disease (as far as I know...I am having a scope on friday)! The docs are perplexed about this random ASCA result...makes me think it is somehow related to celiac. I have all of your symptoms as well!

I had the Celiac Blood test and that came back negative. I should hear about my genetic test tomm. When I swallowed the capsule camera the dr said my small intestines looked good. I should actually say I have had 4 colonoscopies and the first one had inflammation the last 3 did not. My Dr's thought Chrons but now they all say no because they say I dont have enough evidence for Chrons (My white blood cells are always normal and such)

I have had my thyroid checked endless times, all negative. My dr told me that the ASCA is not enough to diagnose someone with Chrons even though it is positive. What is the difference between the drs test and entrolabs test??

Please let me know how your scope goes..

I have a rheum and gastro. In fact I have had many. Rheum says I have nothing related to him. Gastro says no to bowel disease and recommended gluten free if it made me feel better.

I still have no answers just random positive test and feeling sick which is no good considering I am trying to finish college, started a business, and am an Army wife. I dont have time to be sick LOL.

pricklypear1971 Community Regular
pricklypear1971
Posted

You can be gluten intolerant and still be sick as heck, not to mention it can be involved with other chronic diseases.

The Enterolab test can check for DQ1 gene which is related to intolerance.

In short, it's hard to prove gluten intolerance other than by gluten withdrawal and challenge. And yes, it can take a while to heal.

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