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New Celiac Getting Biopsy (long)

Snow Angel

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Snow Angel Newbie
Snow Angel
Posted

Hi, I'm finally coming out of lurk dome... been here a few months.

History:

I had my Doc test me for Celiac after I finally tried a 7 day gluten free diet ...I had removed all other food types over the last 15 or so years ..and never thought about this one.

The first time lab only ran IgA for celiac panel and found IgA deficiency, < 5. I went back to eating gluten for 2 weeks and had the 2nd draw and then stopped, (I needed relief)

I get the report back and the lab runs the IgA again..I wanted to die at the thought of eating it again, but went back for another 8 days to get the IgG test... that showed positive in blood tTG 60 (<10), lesson learned..do not stop eating gluten.

I have classic symptoms plus some from what I've read here. I have the chronic D, symmetrical itchy rash (that nothing ever worked on), malabsorption, Iron & B-12 deficiency (b-12 is better cause I've taken sub ling for years now), Low Vit D, nausea, unexplained anorexia, narcoleptic like fatigue, hypotension, dizziness & vertigo, brain-fog, bloated hard stomach, horrific abdominal pain, chronic migraines, fibro, asthma, amenorrhea, fun neuro stuff (occasional ataxia & slurred speech, visually- inanimate objects move, tinnitus & pulsating- other strange hearing things, double vision, tactile problems)...and a host of other stuff I’m sure I’m forgetting.

Dx: Hashimoto's, I've had that for 7 years, I took levo/syn for the first 6 and it never worked, I take Armour now - it’s much better.

And my adrenals are not good, I just went to a third doc who said my hypothalamus is pretty much shut down. Last doc did small dose of cortef, some stuff cleared up and I was able to gain some weight 14 lbs, (it looked like edema though) but doc pulled me off it.

Family: Irish, German, Swedish and Danish. Many are autoimmune sick too.

You guys still with me :)

It took 2 months to get in to see one of the top specialist gastro centers in my state. They were FLOORED no one recognized my Celiac all these years. I've been go to docs for years chasing my tail for all these OTHER problems since 1994.(Ortho -Neuro -Psych - ARPN - DO - ND- OB- GP's - Endo - Allergist - Immuno/Pulmonary) WOW ..when I write it out like that ..it really hits home. :(

Gastro:

I am really impressed with the gastro doc's I saw, they said "You are definitely Celiac" we need more labs, liver function w/reflex, the fat-soluble vitamins, the DEXA Scan, and the Endoscopy, and "I want you to stop eating gluten right now" I said "WHAT !!" " Won't my biopsy be negative, everything I read at the Columbia medical center said not to stop gluten until all testing is completed !!"

They said "No, we will get it done in less than two weeks, I can assure you, it won't be negative, we can't risk refractory sprue." then the other said we're concerned about lymphoma. I have had swollen neck glands forever...and I did have one removed in my lower groin area when I was a kid because it got really big and popped out. I told them I will not put gluten back in my diet ever again once I remove it and I need the gold standard dx because I don't ever want to hear another doc try to mess with my head and tell me it's an IgA thing or something ..plus I need my family to take this very seriously and go get tested ..they said " It's really Ok to stop, It won't be negative that quick"

What do you think about that ...? What would you do if you were me ..? Does anyone have experience of a 1-2 week gluten-free person still showing positive on a endoscopy and biopsy ..? I have not stopped eating it yet - I am researching this.

Thank you everyone who took the time to read my dissertation.

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ravenwoodglass Mentor
ravenwoodglass
Posted

"Gastro:

I am really impressed with the gastro doc's I saw, they said "You are definitely Celiac" we need more labs, liver function w/reflex, the fat-soluble vitamins, the DEXA Scan, and the Endoscopy, and "I want you to stop eating gluten right now" "

It sounds like these doctors have given you a conclusive diagnosis. It also sounds like they realize how terribly damaged you are. I would give them one more question "If this biopsy does come back negative are you going to rescind the diagnosis?" I have a feeling the answer is going to be no. They do sound like they know what they are doing and clearly recognize that you are celiac. If the answer when you call the office is that stated above I would follow his advice and go ahead and start the diet.

happygirl Collaborator
happygirl
Posted

Snow Angel,

Welcome to the board - we are happy you came out of 'lurking' :D

Good luck!

neesee Apprentice
neesee
Posted

I had been unable to eat for a month, and I still got a positive biopsy. Good luck Snow Angel. I hope you're on the road to recovery soon.

neesee

Snow Angel Newbie
Snow Angel
Posted
  • Author
If this biopsy does come back negative are you going to rescind the diagnosis?" I have a feeling the answer is going to be no. They do sound like they know what they are doing and clearly recognize that you are celiac.

ravenwoodglass... thats a good idea, I think your right and I am just being paranoid, I have come so far in this, I need hand-holding and re-assurance.

Welcome to the board - we are happy you came out of 'lurking'
Thank you happygirl ! it is nice to 'officially' meet everyone ..

I had been unable to eat for a month, and I still got a positive biopsy.
oh neesee thats terrible, but it does make me feel better to know that it's possible to still show damage and get an accurate test in some cases. I feel more confident in the gastro's directive.

I appreciate all the replies thanks,

mftnchn Explorer
mftnchn
Posted

I totally agree with Ravenwoodglass, very good suggestion. The doctors sound like good ones--so glad you found them.

Seems like there are more tests for deficiencies that could be helpful but it could be they are not in the typical lab arena. Seems like a good stool test for intestinal flora, parasites (but they are hard to catch), residues (looking for fat, protein and carbs that indicate you are not digesting) and bile, stuff like that.

From my experience I'd say the Vitamin D is super important and you may need a lot of it. Be sure they moniter your levels and get them up to the newest standard levels, not the old ones.

Snow Angel Newbie
Snow Angel
Posted
  • Author
I totally agree with Ravenwoodglass, very good suggestion. The doctors sound like good ones--so glad you found them.

Seems like there are more tests for deficiencies that could be helpful but it could be they are not in the typical lab arena. Seems like a good stool test for intestinal flora, parasites (but they are hard to catch), residues (looking for fat, protein and carbs that indicate you are not digesting) and bile, stuff like that.

From my experience I'd say the Vitamin D is super important and you may need a lot of it. Be sure they moniter your levels and get them up to the newest standard levels, not the old ones.

Hi mftnchn, We did run some of those you suggested but we never did the culture stool or the O & P w/ giardia. Never looked at residues either ..what is that one called..? I did tell them my poop was green sometimes from the bile. They said it was because of fast transit time. haha.

h.pylori = not detect.

These are my typical Vit D levels, even with supplementing 2200ui's for months & after vacation where I was very tan, I would have though that might help.

Vit D, 25 OH, total = 24

Vit D, 25 OH, D3 = 24

Vit D, 25 OH, D2 <4

We re-ran them this summer after I went gluten-free about 3 weeks total, and was not tan.

Vit D, 25 OH, total = 30

Vit D, 25 OH, D3 = 30

Vit D, 25 OH, D2 <4

I've never hit this high ever..! this said alot to me.

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