KGB1819

Could anybody with experience please tell me if I could substitute 2 cups Arrowroot Powder instead of Potato Starch? There’s this bread recipe I really want to make in my bread maker that calls for 2 cups potato starch, and potato starch is nowhere to be found in my area. We all know gluten-free baking products are so expensive, I don’t really wanna trial and error too much 😅 alternatively I can just order some. But I’d like to try using what I already have if possible. Thanks for the input!!

@Daisy23 yes! Don’t give up! I know a lot of people will say celiacs won’t effect your skin/face. But don’t give up hope. Especially if lymphocytes were found in your biopsy. I can say since being gluten free for a couple of months now, that it has definitely made an impact on the rashes on my face. So much so, that if I try to eat out and I think I got it 100 percent gluten free, the next day my face shows me I didn’t. Even my family has been able to tell the difference. I switched my primary care doctor, and when I saw him last month, and he found out I had celiacs, the first thing he actually asked me was if I struggled with skin rashes on my face. That was before I even told him I struggled with that before. So it does happen. I go back to my gastro at the end of this month for him to retest my tTg, to see if gluten-free has been helping. Feel better soon! (We also were hit with the flu this month. It’s no fun)

Thought I’d give everyone an update! 
 

I had an Endoscopy done in the middle of December, following the elevated tTg IGa blood test. Though to the eye, there was no damage, my doctor did call me a couple weeks ago saying my biopsy showed lymphocytes. They said that can be non-specific, but with my blood test, they’re going with celiacs, and they’re going to retest my levels in 3 months.

I appreciate each and every one of your comments, words of advice, and personal experience! 
 

& anyone else who stumbles upon this post in the middle of trying to figure out their diagnosis, it is SO important to know that everybody’s symptoms, and findings can be so different from one another.

I’m so glad I continued to advocate for myself.

Another UPDATE:

I met with my GI doctor last week, and he said  since my tTg IGa was elevated, he wanted to do the endoscopy. Which, I had done today.

He said nothing was visibly seen as damage on the endoscopy, but that he took several biopsy’s, which I’ll know the results of in about a week. I’m assuming the biopsy's will be negative. Since typically from what I’ve seen, they can see damaged villi on the endoscope? That being said, regardless, he said he still wants me to start a gluten free diet and give it at least 3 months to see how my body reacts to it. He also said I should ask my doctor about testing me for Sjögren's syndrome, with some of the other symptoms I have. From some of the things I’ve read, there’s a link between that and celiacs.

Even though I’m still waiting on the biopsy results. I was very pleased with my GI doctor. I respected that he encouraged now that I have the biopsies out of the way, that I go ahead and start a gluten-free diet. 

Yeah, I have my blood test results in my original post. Only my tTg iGa was elevated. I have an my referral appointment with my GI doctor this Tuesday. After doing some talking, I started the gluten challenge Thursday night. That way by the time I see him, I would have been eating gluten for almost a week. So hopefully he will be able to schedule the endoscopy sometime the end of December. I’m not sure how fast the small intestine heals? That if it is true celiacs, the 3 weeks I was gluten-free, if it would have made a noticeable difference on the endoscopy?

I’ll keep everyone posted, though!! I appreciate all your advice, and responds. I will say… just a few weeks gluten-free, and now taking in gluten for a couple days. I really do wonder if this has been my problem, all along. & if I was just blind to it, and what my body was saying. Though I haven’t had a ton of GI problems like some do, I have always dealt with what almost feels like a burning sensation right in the middle of my upper stomach, that comes and goes. I’ve always just lived off TUMS and Pepto when it flared up, but never put too much thought into it. These last three days, though. That pain flaring up again after meals. Also I have had ongoing hip pain that they believe is snapping hip syndrome, with hip bursitis. That also went completely away during those 3 weeks gluten-free. My husband also made comment of how during those few weeks of eating gluten-free, I didn’t get that 2:00pm fatigue that I got everyday, where I always needed coffee to pick me up. I’m instantly back to being tired, though. Along with dermatitis back on my eyelids within just 3 days 😖

So, even if my endoscopy comes back negative. I think it’s safe to say I will definitely be trying to go gluten-free for several months, to give my body a chance to see if all of these things heal. 

So, my doctors office finally gave me a call yesterday. They said my blood work was abnormal, and they’re referring me to a GI doctor for an endoscopy to rule out celiacs. 
 

With that, I think I decided to just continue to eat gluten free until I see the GI doctor and express to them my symptoms have been getting better over the last 3 weeks eating gluten-free, and see what they recommend, and go from there. If they recommend I do the gluten challenge, I will go from there. 

UPDATE:

Went to the dermatologist today. She prescribed me a steroid cream, as she said my eyelids were really thick and that I have dermatitis, but she believes if it were due to gluten, I’d have the rash on my elbows and knees, as well. 
 

On that note, I have called my nurse practitioner office twice since my lab work (3 weeks ago) and both times, they’ve told me she hasn’t gotten around to viewing them, yet. 
 

Besides having to look around for a new primary, since the one I’m currently dealing with, is really dragging their feet. I’m at a loss of if I should continue to eat gluten free, and see if my symptoms go away (rash included) or continue to eat gluten, and find a GI and do the biopsy. 
 

I know the biopsy is required for a definite diagnosis. But I also hate to undo 3 weeks of eating gluten-free, and noticing changes in my bloat, fry eyes, and dermatitis on my face not being nearly as bad, to do the gluten challenge in order to do the biopsy. 
 

Thoughts? I know my tTg iGa was elevated. But is it worth doing the biopsy? Are there other things that can cause this?

Thanks everyone! Still waiting to hear back from my NP!! 😩 I have an appointment with a dermatologist tomorrow, since I have been now experiencing tiny fluid type blisters all over my cheeks and chin, that almost feels like sandpaper. Along with the reoccurring flaking of my eyelids, & red splotchy rash around my eyes. I have changed to a gluten free diet for almost 2 weeks, now. My eyes have gotten significantly better since then, but I’m assuming I’ll have to do the gluten challenge. From what I read, to do a skin biopsy for possibly DH I’ll also have to be eating gluten. & I’m not sure how long that stays in your system

Could anybody please look at these blood test results, and share with me your experience and if these look like a possible positive?

Deamidated Gliadin Abs, IgA20-19  (units)MB

Negative 0 - 19

Weak Positive 20 - 30

Moderate to Strong Positive >30

FDeamidated Gliadin Abs, IgG10-19  (units)MB

Negative 0 - 19

Weak Positive 20 - 30

Moderate to Strong Positive >30

F

t-Transglutaminase (tTG) IgA14   H0-3  (U/mL)MB

Negative 0 - 3

Weak Positive 4 - 10

Positive >10

.

Tissue Transglutaminase (tTG) has been identified

as the endomysial antigen. Studies have demonstr-

ated that endomysial IgA antibodies have over 99%

specificity for gluten sensitive enteropathy.
 

t-Transglutaminase (tTG) IgG30-5  (U/mL)MB

Negative 0 - 5

Weak Positive 6 - 9

Positive >9

FEndomysial Antibody IgANegativeNegative MB

FImmunoglobulin A, Qn, Serum14487-352  (mg/dL)MB

So, out off all of these, the only one red and flagged was my tTg iGa. Even with that, it seems much more lower than a lot of people I see on here. With everything else being negative, is it unlikely I have celiacs?

my doctor is out all week, so they said it’ll be sometime next week that she’ll be able to call me and discuss my results. 
 

Also, what’s everyone’s experience with different symptoms? Is it always GI related?

the reasoning I got tested, is for the last year now, I’ve been suffering with chronic dry eye, and I keep getting a scaly rash. About a year ago I had a scaly rash all over my torso that no one knew what it was. & now for the last couple of months I have had a scaly rash all around my eyelids that have been burning/bleeding, no matter what I’ve tried. After doing some reading, I wonder if it is Dermatitis Herpetiformis? Besides joint pain, especially hip pain, bloating, and anemia, I don’t have any GI related symptoms. 
 

my doctor agreed to test me because when I was a teenager they did the gene test on me, which came back positive. It was about the same time I have pancreatitis and was having some issues. 
 

Some input would just be appreciated. Thank you! 🤗