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Good luck, make sure that SED rate gets followed up in case there is something else going on.
I see my FL PCP in a couple weeks, she is more receptive to my concerns since she has treated me for 9 years, she is on top of the SED rate, after the 84 one in May I found out from another doc that I had a common bac infection occurring so that might explain it...but was it occurring in April with the 65 SED rate? Who knows, But PCP will recheck it for sure!
Well I'm hoping if I can get some sort of DX for myself...it will encourage my sister and my mom to steer him in the right direction for his issue. I have little say, but for a kid who rarely would ask for something for him to bring up these things to my mom show they must be bothering him.
When I first read about Celiac I told my mom I wondered if my nephew's mild behavior issues growing up were due to it?
Well just spent weekend with him, he is 18, noticed right off he has a sore spot on his LIP exact spot where I get one. He also has rash on his chin like I get. Then during lunch he was not eating and told my Mom that food makes him sick to his stomach!!!!!!!! He even asked her about the place on his lip, if she thought it was an infection (she's a nurse) because he said he's "popped" it...like he would a pimple...3 times and it's still not gone away.
I'm definitely going to push to get the genetic text now! My mom thought he needs some OTC meds...or to see a doctor, I know the docs around here would just give him some prescriptions and send him on his way.
The "rash" or skin issue I have are either yellow blisters on my face, or hard painful bumps that are not pimplelike (no core or head). Just had a few tiny sores appear on my chest, again, I have visible scars from previous outbreaks. Face, scalp, neck/hairline, back, chest, scars on arms from previous sores, bump on roof of mouth, and blister cluster in arch of foot. I've made an appt for a derm my PCP in FL recommends. Yes I now live in Ohio but seem to have to travel to FL to get decent care...I lived in FL for 9 years.
Any thought to why GI issues are worse in the morning? I spend at least and hour in the bathroom, just cannot empty bowels, not constipated per say, just cannot move everything out., stomach continues to cramp the rest of the morning, might actually need to have another BM or it's just cramping...maybe mucus, but I feel completely wiped out many times I just crawl back into bed and sleep if at all possible, I have even called off work a few times because it was that bad and I could not function. I find that if I survive until afternoon the issues pretty much go away or at least the painful cramping/spasms. I often say if I could just find a way to make these symptoms occur before bed instead of before work I could manage somewhat better...although ideally I want to get resolve them all together.
Yes, I know that...as I stated the IBS, Low Vit D, Low B-12 and the anemia can come be after effects of gastric bypass but they are all also related to Celiac or Gluten, intolerance as is the skin rash, acid reflux, missed periods, night sweats, weight gain...etc.etc.etc.etc.etc. Thus the reason I'd like some real answers instead of just blaming the surgery...before I had surgery everything was just blamed on being obese.
Just got my retested SED rate via the patient portal...it's now 86. Something's not right....awaiting to see what PCP will recommend tested this week. The local doctor who ran the original SED rate that was 65 has NEVER said a thing about it....grrrr hate some doctors.
Oh geez I think I could easily find someone to discredit a test...that is IF they'd even give me a test! Especially now that the initial blood panel was neg, the derm was like "why biopsy if the blood test was negative?"....isn't a skin biopsy needed for dx of OTHER skin issues too? But after her show of ignorance I now longer trusted she'd even do the DH biopsy correctly. I am just sooo tired of no one wanting to do actual tests, they look at me, push on my belly and hand me medication for IBS. They blame my previous gastric bypass for the low Vit D, low B-12, borderline anemia and GI issues. Despite the fact I was anemic BEFORE I ever had gastric bypass. I'm just getting inpatient and tired of wasting time and money going to new doctors. I will see the PCP in FL when I visit in June but she can't do an ENDO...just frustrating.
My Celiac panel was neg, very high Total Serum Iga? High SED rate 65. PCP who has treated me for the past 9 years is back from maternity leave and is said Celiac wouldn't account for that high of SED rate, she ordered it retested (from FL, I am now in Ohio) waiting to see if it's still high. Saw local dermatologist about skin rash, she refused to do a biopsy said she has two other patients with DH and my rash is not presenting in those areas. YET, her visually made DX was Eczema??? The GI I saw here said he'd be willing to do an endo, but that was before my blood results came back neg so not sure his opinion now....wondering better option might be to have the genetic blood test run, then just go gluten-free and see if symptoms get better? I really want some REAL confirmation either way.
NP said "well if the blood test were negative? then why test?"
Hmmmmm how about you should biopsy a persistent skin rash in general before you go prescribing medication??? So then the doctor comes in and says she has two other patients with DH and my rash is not the areas that DH presents. Really...currently on face, neck, back, scalp...scars on arms and chest from past issues??? Not many other areas left???
Scolding me for scratching...that's why they aren't healing...use this medication for 14 days so the areas can heal. Ok...so I ask...this will heal the areas, but will it stop new spots from developing? "If new spots occur put medication on them and DON'T SCRATCH". Ok so if medication is so strong I can only use it for 14 days...what happens after that?
It's like I'm asking for a full body scan or something radical and expensive???? Skin biopsy...in office procedure.
So do I try to find another doctor...I mean how do you know until you get there? I don't want to waste more time and $ going to doctors who will refuse to actually DX something...I say that again because why not biopsy to see WHAT it is...of course by her ignorance on the matter I figured she'd have not done the biopsy correctly anyway.
OR do I just cut out gluten and see what happens? I haven't gone back to GI yet because I was going to see what the skin biopsy results were. He was certain it was "just IBS" but at least he ordered the Celiac panel which was negative.
PCP in FL (I'm back in OH), is concerned with SED rate of 65, normal is under 20...she wants to know what my doctors here are saying is the reason...um yeah the doctors HERE suck and have not said anything about...she would like it checked again got see if it's still high. I told her I'd try...but doctors around here don't seem to like educated patients
There is also the option of Gastric Sleeve, they do not bypass intestine, but no foreign object in you that can slip or cause erosion.
As someone in the opposite position it is good that he was DX before surgery. In general, I don't see a lot of information re: weight loss surgery and celiac...so even his surgeon might not have definite answers.
You might find people on a weight lose surgery forum. www.obesityhelp.com use the search feature to find posts that mention Celiac.
I am 35... my Total serum was high and my SED rate was 65 (normal 20)...other celiac panel was neg. Hitting roadblock at getting skin rash biopsied. PCP is concerned with SED rate, wants it rechecked....surprise the GI doc who ordered it never called about it.
I even told the derm today that I was hoping for a biopsy of skin to see if it's DH before I decide whether to have an endoscopy biopsy...as in you know let's do a non-invasive office procedure before I have to go under anesthesia, etc. and STILL she brushed off the possibility it was gluten related or any REAL diagnosis of the skin rash...instead it is dx'd "other atopic dermatitis or related condition"