Please Help Me!

[Christina's.My.Name]

I warn you this is going to be long so if you make it thru I soooo appreciate it!

So my entire life I have been exhausted and always wanting to sleep and I always struggled with my weight and was anemic from an early age as well. When I say exhausted I mean extreme bone shattering I am going to fall over and I can fall asleep literally within 3 seconds anywhere anytime if given the chance and the brain fog and memory loss is utterly debilitating. In 2004 I had gastric bypass and lost around 150 lbs and have been steady about 155 for several years. In 2009 I was diagnosed after a sleep study with narcolepsy and have been on stimulants other than during pregnancy and nursing which was most of 2010 thru 2014 (3 pregnancies resulting in 2 babies plus nursing, the last one for 2 years-he's a pig"-yes one was a miscarriage). In 2013 I was dx with hbp and put on norvasc and still showing as very anemic and non responsive to oral iron or b12 shots. Sent to hematologist due to that and low wbc and rbc. Hemp had no answers. At that time I started getting super itchy rashes with bumps on the insides of both elbows which he seemed interested in and mentioned lupus but I didn't think I fit that criteria. Another thing to note is my mother has always had all of the same blood issues and never had an answer so to me it was just the way we were and you live with it. Fast forward to a few months ago I start losing weight. The 155 I've been for years starts dropping to 149 then 143 then 138 all the way down to 125, the exhaustion gets worse if possible, my nails start peeling, and then I'm constipated for 3 weeks and then starts the diarrhea everyday, nausea, vomiting, neuropathy, and then the best of all, my entire moth and tongue becomes raw with ulcers. My mom had been diagnosed with celiac the year before by blood screens by a arnp but I don't know if she truly is although she does get the rash when she eats gluten. So I went last week to this same nurse practitioner to see if I had celiac and she drew blood last Wednesday morning. Friday morning they called me and said I had to go to the er because my hemoglobin was at 6.4 and my ferritin was at 1 so I went there and was admitted. I now had a hemoglobin of 6.8 so they gave me 2 blood transfusions and 2 iron transfusions and I left Sunday after they did an endoscopy. Well I just got the celiac panel and biopsy results and they were both negative, villi looks fine.

So over the past 2-3 weeks I have done extensive research on celiac and ncgs I've read every blog every website I've bought all of my gluten free food I've told everyone I know I was SURE I was celiac and......wimp womp womp.....I'm not. So I have so many emotions from disappointment that I don't have this definitive answer of why I've always had these issues, to embarrassment that I was so confident, to sadness that I'm not one of you, to relief that I don't have this horrible ai disease that damages me, to frustration that once again the doctors have failed me.

I think in my research it seems that the ncgs folks can all of the same symptoms other than the dh and the villi damage right? So is there a chance I could be in that group? I've never gone gluten-free because I wanted to get tested first so do you think it'd be worth it to give gluten-free a try? If it helps dramatically does that mean I'm ncgs?

Any thoughts or criticisms are welcome, I'm just feeling totally lost as I truly thought I had my answer and it was snatched away!

Thanks, Christina

[bartfull]

Christina, welcome to the forum. Do you have copies of your test results? Often they don't do the full panel. Also, and this is a biggie, people with DH very often don't show up as positive on blood tests or even the biopsies. DH is celiac manifested in the skin instead of the gut. To get tested for DH you need to find a good dermatologist and have him biopsy clear skin right NEXT To an ACTIVE lesion. If you test positive for DH then you DO have celiac. Go over to the DH section here at the forum and read as much as you can. Our resident experts there can help you.

 

Even if you have NCGI, you can suffer just as much or more than folks with full blown celiac. You need to be eating gluten to be tested, even for the biopsy, and you can't be on or recently have taken steroids or it will mess up the test. Once you have completed testing, no matter what the results are, you should try going gluten-free. And give it a GOOD try. Be strict and give it a good six months. The Newbie 101 thread in the coping section will teach you how.

 

I hope you're feeling better soon, and don't be afraid to ask questions. We're here to help.

[Christina's.My.Name]

Thank you so much for the welcome bartfull! Yes I got the copy and all it says is celiac disease screen *9 ref range (0-19 -) and a million other things but none are like the iga type stuff so idk exactly what that screen was comprised of. I was eating full gluten for both tests, have never tried gluten-free. The very first blood test I did with that nurse practitioner was for a full celiac screen including allergies like wheat, gluten, etc and I get that back next week. I guess I'm just sad I can't say "I'm celiac" and no one can question it but I'm starting today to do a fully gluten-free diet to see if it helps. I just know if I'd had that official dx I'd be stricter in my mind but if it makes a big difference it may be better in the long run because I wouldn't have the risk of damage thru accidental glutening. I hope I'm making sense, I'm kind of jus rambling at this point, I'm just so sad and confused and frustrated. I have read everything in the 101 and I will give it a really good go. Please any other thoughts?

[squirmingitch]

Christina, Bartful is right. I'm not sure you want to go gluten free just yet. 60% of celiacs with dermatitis herpetiformis test negative on the blood work.  Besides, you say there is none of the IgA stuff on it like you've seen us talk about on here or other sites on the internet. That means they didn't do the full celiac blood panel. You say your NP ordered a full celiac screening but the tests won't be back till next week. IF she DID order the FULL CORRECT blood panel it might turn up positive. Do you know how many biopsies they did on you? They should do at least 6. If they did 1 or 2 they can easily miss it. 

Can you scan your paperwork & post it? it would allow the people here who are very good at interpreting them to tell you what's going on -- what they did or didn't miss.

[cyclinglady]

Saw your other postings and I am concerned that the correct celiac blood tests were not given (at least not all of them). The tests include:

-tTG IgA and tTG IgG

-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

And done by a GI doctor:

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

(Source: NVSMOM -- )

You must be your own health advocate (hard when you are anemic as I have been there) and get copies of your test results and do not rely on the word of one health practioner. I tested positve to only the DGP iga and the rest were negative. Yet my biopsies revealed moderate to severe damage to my intestines. Getting a DH diagnosis can be harder to get, but listen to our forum experts.

Golly, your mom has celiac disease and you have so many symptoms, your chances are high that you have it.

[Christina's.My.Name]

Saw your other postings and I am concerned that the correct celiac blood tests were not given (at least not all of them). The tests include:

-tTG IgA and tTG IgG

-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

And done by a GI doctor:

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

(Source: NVSMOM -- )

You must be your own health advocate (hard when you are anemic as I have been there) and get copies of your test results and do not rely on the word of one health practioner. I tested positve to only the DGP iga and the rest were negative. Yet my biopsies revealed moderate to severe damage to my intestines. Getting a DH diagnosis can be harder to get, but listen to our forum experts.

Golly, your mom has celiac disease and you have so many symptoms, your chances are high that you have it.

Thank you for your concern CyclingLady! Unfortunately my test was run through Genova and it did not include all of those different things, I think it just had the tTG IgA, the tTG IgG, and the total serum IgA, I think is what it was. It was through a ARNP in functional med and she assured me that those were all that were truly needed even though I had walked in there with a hand written list of what you posted...which I had copied down off of your post! All were negative. Later I read about Cyrex labs and how they test for all the different parts (?) of gluten or strands or whatever and now wonder how that would've resulted. My endoscopy I'm pretty unsure about as well. When the CBC results got to the ARNP she called and said I immediately had to go into the ER due to the 6.4 hemoglobin and non existent ferritin and vitamin D etc so while in hospital they arranged for the endo w/ biopsies. I had the nerve to ask if he does the 6-9 as recommended to find the celiac damage and he was quite offended and said "no I only do a couple, I know what to look for and if its there I'll see it." Soooooo, it was also negative. But I do have that handy dandy lab result also from Genova showing I am sensitive to gluten, wheat, almonds, dairy etc so I guess my plan is just to do what I would've done with a Celiac dx, not eat gluten! I am about a week and half gluten-free and I have had some improvement. All of my mouth and tongue sores are gone (hallelujah!!!), the diarrhea is slightly improved, brain fog is improved, I have lost 2 more lbs which is bad of course. I just now don't know if I will see improvement with just gluten-free or do I have to do the dairy, nuts, and all that too??? I guess we shall see. I will be repeating blood work to test hemoglobin and vitamins and all that to monitor that but don't really know where to go from here. Kinda of big WOMP WOMP.