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Help for Gluten Challenge/ Advice on Results

Zoso123

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Zoso123 Rookie
Zoso123
Posted

Looking for advice and also to help those undergoing testing. I went to my general practitioner back in August with nausea, bloating, diarrhea, migraines, sluggishness, and a feeling of general unwellness. I was eating a gluten diet at the time. My doc ordered the dual antigen screen- it came back positive for celiac. He set up an appointment for me with a specialist. I called the specialist and they could get me in 8 weeks later. I asked the specialist if I went gluten free is this would affect any testing. They said “no” that I was in a gluten diet for so long I would be fine. However, 8 weeks later, the blood test showed no celiac- my results were normal after 8 weeks on a gluten free diet. I felt great, for me the turnaround was almost immediate- in a week or 2 I felt amazing. But that didn’t help with getting accurate results (mostly wanted to rule out another autoimmune disorder). I then went on gluten for 7 weeks (I ate a lot of gluten- like at least a bagel a day and much more on some days- I wasn’t messing around, I wanted an accurate diagnosis)and repeated the blood test at 7 weeks. It came back a very weak positive for deamidated gliadin abs iGg. I then underwent a endoscopy because the doc said that number, although positive, was not high enough to go off of. The endoscopy came back normal- however, the doc noted that higher levels of antibodies were found but not in the “abnormal range.” So, they were present, just not in crazy levels. I then kept eating gluten- I should note my doctors SUCK (could do a whole other post just on this- I have been my own doctor pretty much). I just took another blood test at 3 months eating gluten. My levels are now SUPER high for deamidated Gliadin abs IgG. The doc is confident I have celiac. Question is- my doc is so bad, I wanted to check here to make sure that it indicates celiac. I also wanted to help others as I know there’s lots of conflicting information on how long to do a gluten Challenge. For me, it took 3 months. My gut tells me I am early stage celiac- I don’t have full blown damage yet, but if I keep eating it I am sure it will do some damage. Just wanted to highlight this as if your case isn’t super bad yet, you may have to eat gluten longer- everyone is different. Any advice on my results would be awesome!

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Zoso123 Rookie
Zoso123
Posted
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Also I should add that in the 12 weeks, my vitamin d plummeted and now am deficient. Would you guys accept a celiac diagnosis (I am pretty confident that I have it- I was sad before the challenge that I couldn’t eat gluten anymore. Now after the challenge i am EXCITED to never eat it again as I feel like such crap now) or can a positive diamodated Gliadin  IgG indicate anything else? Or is it specific to celiac? I am happy to get a diagnosis,  but want to make sure it’s the right one. I wish I trusted my doc more (example- 3 days ago they called and said congrats, no celiac, u can eat gluten!! The doc signed off on it. But I looked at my results and pointed out that the deamidated IgG levels were not reported yet. The doc said whoops my bad. The next day they came back positive and I got another call & they said, nevermind, no gluten, you’re positive! They are idiots). 

Ennis-TX Grand Master
Ennis-TX
Posted

.....damn I thought I had run into stupid doctors on my own, yours flip flop more then a ADHD kid and I should know that one. Yep celiac and gluten-free for life....get copies of all your POSITIVE test and compile them in a folder, write the others off as doctor stupid was tripping on acid. Get copies of all your medical records and personally take them to a new doctor....might want to look through them first and make sure the idiot did not put anything in there wrong. Well if you can anyway......
Congrats on the diagnosis and sorry you found one of the idiots, you get those a lot in life just sucks when it is someone in charge of your well-being and health like that. I take it you have already been through the newbie 101 thread and gone to a whole foods diet to boost up the healing, cleaned out the kitchen and set for the haul.

 

Zoso123 Rookie
Zoso123
Posted
  • Author
50 minutes ago, Ennis_TX said:

.....damn I thought I had run into stupid doctors on my own, yours flip flop more then a ADHD kid and I should know that one. Yep celiac and gluten-free for life....get copies of all your POSITIVE test and compile them in a folder, write the others off as doctor stupid was tripping on acid. Get copies of all your medical records and personally take them to a new doctor....might want to look through them first and make sure the idiot did not put anything in there wrong. Well if you can anyway......
Congrats on the diagnosis and sorry you found one of the idiots, you get those a lot in life just sucks when it is someone in charge of your well-being and health like that. I take it you have already been through the newbie 101 thread and gone to a whole foods diet to boost up the healing, cleaned out the kitchen and set for the haul.

 

Thank you so much! So is the positive IgG pretty indicative of celiac (could it be anything else)? I havent read any of those posts on diet, so I’ll have to start. Honestly, I’m happy to start gluten free. At the start of this, I was so bummed out that I’d have to give up foods. But confirming that it is gluten making me sick, I don’t want to eat it anymore. Kind of nice I got a “farewell to gluten” tour but so happy it’s over. Unfortunately, there is only one office here in Asheville, NC and it’s renowned for being awful (just look at the reviews!!) I’m on Nashville a lot for work, so maybe I can look for a good doctor there instead. 

Feeneyja Collaborator
Feeneyja
Posted

On the plus side, at least the doctor did test for deamidated gluten peptide. Most docs don’t do dGp. If your doc didn’t (as neither my doc nor my daughter’s doc did), you would be left in limbo.  So be thankful you have a diagnosis and a solution and get to a celiac savvy doctor for future monitoring. 

Ennis-TX Grand Master
Ennis-TX
Posted
1 hour ago, Zoso123 said:

At the start of this, I was so bummed out that I’d have to give up foods.

I did a bit of a compilation of gluten free foods, you can find just about everything gluten-free now you just have to pay a bit more and shop around. I have gotten great at cooking gluten-free also....and bashing cravings with extracts....heck I just did a fun experiment where I wanted a super chewy gluten like bread, I did my own bread recipe with double almost 3x the psyllum husk I would normally use.....made super chewy and moist bread, not dry chewy I wanted but a doughy soft chewy...was interesting. Anyway this list and looking around should cheer you up a bit for some treats to get once in a while https://www.celiac.com/forums/topic/120402-gluten-free-food-alternative-list-2018-q1/

 

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