Positive Tissue Transglutaminase Ab IgA and awaiting biopsy... feeling super anxious

[LJR1989]

Hi All,

I'm new here. I am feeling super anxious these days.

I've had a really weird last couple of months. At the beginning of December while at work I had a really weird bought of shortness of breath and bloating... It started quite suddenly and scared the crap out of me...my heart started to race and I was about this close to calling an ambulance... my heart rate eventually slowed down but the bloating continued through the night and into the morning until I had a couple bowel movements (loose), and I started burping a crap ton. Since then I have basically been battling acid reflux, bloating, and burping non stop. The symptoms didn't seem to get particularly triggered by spicy foods or wine or the normal things that would trigger acid reflux either. I could eat something as bland as a half of an english muffin and the reflux would be just as bad as if I ate a tomato. 

I went to a GP to see if I could get a GI consult .... they ran h pylori, negative.. and gave me PPI's for high stomach acid.

I took the PPI's for about 3 weeks with no help... stopped taking those. During this time I also developed a lot of mucus in my throat and it was also occasionally in my stools. 

I finally went back to the doctor for a GI referral hoping I could get some help with my acid reflux. I was a bit shocked with the doctor I saw suggested celiac disease... my main concern was reflux. I had had either constipation or diarrhea for months now (rarely a normal stool), but I just attributed it to stomach acid levels as I read that was a symptom.

Fast forward to yesterday and I find out that I tested positive for TTG Ab IgA. The level was 38, the normal range was 12 or under.  My liver enzymes were also slightly elevated and I was B12 deficient. My ferritin was ok, but in the low range of "normal". I have 4 blood relatives with celiac (not all of them in the same family) and although I am still awaiting a biopsy my doctor thinks (well, he seems almost certain) that based on my family history and blood work that I do in fact have celiac. My feet and hands also tingle a lot (feels like more so after I ingest gluten), and some brain fog. 

I guess I am just looking for some support. I am still in a bit of denial. I was just wondering if anyone else had initial symptoms that presented the same as me (ie reflux, burping and bloating)? I just am having a hard time ... I just thought I had a stomach acid issue!

[GFinDC]

Welcome to the forum!

First off, don't be too worried about having celiac disease.  It's a condition that we can treat/manage ourselves usually.  The treatment is the gluten-free diet.  The gluten-free diet can be quite an adjustment and learning process.  But staying on the gluten-free diet will reduce the immune response and allow your body to heal.

Don't stop eating gluten until the endoscopy is done though.  You need to keep eating at least a slice of bread a day to get correct test results.

Edited February 7, 2020 by GFinDC

[LJR1989]

2 hours ago, GFinDC said:

Welcome to the forum!

First off, don't be too worried about having celiac disease.  It's a condition that we can treat/manage ourselves usually.  The treatment is the gluten-free diet.  The gluten-free diet can be quite an adjustment and learning process.  But staying on the gluten-free diet will reduce the immune response and allow your body to heal.

Don't stop eating gluten until the endoscopy is done though.  You need to keep eating at least a slice of bread a day to get correct test results.

Thanks so much for your kind words! Yeah I definitely know it will be an adjustment. I also have 2 cousins and and an uncle confirmed with celiac disease plus another cousin waiting on biopsy, so at least I have some support. 

 

I think I am just most scared of a negative biopsy result and then being in diagnostic limbo. I am continuing to eat gluten every day. 

Just wondering, is there a correlation between the number of ttg antibodies in your blood and the amount of damage to your intestine? Does more antibodies signify more damage or can you have a lower positive antibody and still a lot of damage? 

[Fenrir]

From what you describe with the family history and the postitive blood test+symptoms I would be very surprised if it doesn't show celiac on biopsy. 

However, given all that as well if it were to be negative I would just go gluten-free anyway. You clearly, at the least, are sensitive to gluten and even if you have another autoimmune disease, a gluten-free diet generally improves symptoms of many of those diseases. 

[LJR1989]

1 hour ago, Fenrir said:

From what you describe with the family history and the postitive blood test+symptoms I would be very surprised if it doesn't show celiac on biopsy. 

However, given all that as well if it were to be negative I would just go gluten-free anyway. You clearly, at the least, are sensitive to gluten and even if you have another autoimmune disease, a gluten-free diet generally improves symptoms of many of those diseases. 

Thanks for the input Fenrir. 

I think I am just a little bit in denial because I didn't really think I could have celiac. But, that being said, at the time of testing I think I had a lot of misconceptions about the symptoms of it, and given that I was sure I didn't have it. I always just figured it was characterized by like, severe digestive problems. After educating myself a bit, I realize I was definitely wrong and even my cousin was asymptomatic when he was diagnosed. 

My sister also has hypothyroidism and there is a history of Hashimoto's on my mom's side. My TSH levels were pretty high (4.26 with the high end being 5.0), so my doc thinks I'll end up with that too eventually. 

I will feel better once I get a confirmed diagnosis. Hopefully I will get in to the GI soon and get it confirmed sooner than later! It will be such a relief to have an answer. 

[Fenrir]

It seems very daunting at the beginning, like it's going to totally change your life. I'm about 6 years out now from being diagnosed and really, I don't spend a lot of time thinking about celiac disease anymore except when I'm on here. You just get used to everything, it's the norm. In fact at some point you'll probably start thinking going gluten-free is no big deal. 

I get people that find out that I'm a Celiac and can't eat gluten and they say, "wow, that must be horrible". I just look at them and say " I don't even think about it anymore and it sure as heck beats feeling like total garbage all the time. I'm quite happy now thanks". 

 

 

[LJR1989]

7 minutes ago, Fenrir said:

It seems very daunting at the beginning, like it's going to totally change your life. I'm about 6 years out now from being diagnosed and really, I don't spend a lot of time thinking about celiac disease anymore except when I'm on here. You just get used to everything, it's the norm. In fact at some point you'll probably start thinking going gluten-free is no big deal. 

I get people that find out that I'm a Celiac and can't eat gluten and they say, "wow, that must be horrible". I just look at them and say " I don't even think about it anymore and it sure as heck beats feeling like total garbage all the time. I'm quite happy now thanks". 

 

 

Thanks so much for the positivity.

Yeah, I suspect my grocery shops are going to turn into an hour or two ordeal for the first while anyways, just reading labels and stuff and figuring out what is safe. I think it will be good for me though. I'll definitely be eating more fresh whole foods and a lot less processed crap, which is not good for you anyways! My hubby is being super supportive and really positive and looking at it as a way for us both to improve our diet, so that helps

[Fenrir]

13 minutes ago, LJR1989 said:

Thanks so much for the positivity.

Yeah, I suspect my grocery shops are going to turn into an hour or two ordeal for the first while anyways, just reading labels and stuff and figuring out what is safe. I think it will be good for me though. I'll definitely be eating more fresh whole foods and a lot less processed crap, which is not good for you anyways! My hubby is being super supportive and really positive and looking at it as a way for us both to improve our diet, so that helps

What I suggest to people just diagnosed:

Eat meat, fruit and veggies. No sauces (outside of ketchup or butter or unless specificly labelled gluten free). Spice as you like. If you like need a carb, add in plain rice, that you can spice however you like but don't buy seasoned rice products. 

Eat as few packaged foods as possible and only ones labeled gluten-free. Processed foods can cause inflammation in the gut and being a celiac that's recovering you don't need any extra inflammation. 

Basically, stick to whole foods. Avoid eating out until you become more educated on how to be safe doing that unless you have a gluten-free restaurant. 

This is the easiest way to go gluten-free fast, just stick to veggies, fruit and meat. Also, some people feel better if they do intermittent fasting. You have 8 hrs a day that you eat meals during, outside of those eight hours you don't eat anything. So, maybe you skip breakfast, eat lunch around noon and don't eat anything after 8 pm. It just gives the GI tract more time to heal without possibly being irritated by food. Not required but may help you get better faster. 

[cyclinglady]

I have Hashimoto’s and I would not be happy with that TSH.  My thyroid antibodies were off the charts, long before my TSH became elevated.  You might have those antibodies checked.  

If your celiac disease diagnosis is confirmed, there could be a chance that your thyroid might be saved from damage by going on a gluten free diet.  Some endocrinologists also treat with a tiny dose of hormone replacement.   Mine did prescribe a tiny dose of hormone replacement, but it not work because I most likely already had celiac disease that was not diagnosed until 20 years later.

Although my Thyroid is permanently damaged, it is no longer enlarged and I do not have nodules.  Make sure your doctor feels your thyroid!  By treating my celiac disease and calming down my immune system, I helped my thyroid too.  

Autoimmune is all linked in my opinion.  

[LJR1989]

29 minutes ago, cyclinglady said:

I have Hashimoto’s and I would not be happy with that TSH.  My thyroid antibodies were off the charts, long before my TSH became elevated.  You might have those antibodies checked.  

If your celiac disease diagnosis is confirmed, there could be a chance that your thyroid might be saved from damage by going on a gluten free diet.  Some endocrinologists also treat with a tiny dose of hormone replacement.   Mine did prescribe a tiny dose of hormone replacement, but it not work because I most likely already had celiac disease that was not diagnosed until 20 years later.

Although my Thyroid is permanently damaged, it is no longer enlarged and I do not have nodules.  Make sure your doctor feels your thyroid!  By treating my celiac disease and calming down my immune system, I helped my thyroid too.  

Autoimmune is all linked in my opinion.  

Thanks for this!

Yes my GP did say the levels were high "normal" and we should keep an eye on the thyroid and measure levels again in 6 months or so. I am tired a lot and also have the B12 deficiency but I guess just trying to see if celiac is the issue and whether or not the gluten-free diet will help with those problems. I go for B12 shot tomorrow and have to go weekly for at least a month. I suspect if the Ttg IgA positive I got turns out to be a false positive, Hashimoto's may be the reason, especially since the symptoms related to B12 deficiency seem to be my main symptoms, and Hashimoto's is also related to b12 deficiency.  I am experiencing some GI symptoms though,  like diarrhea, which seems to be worsening with time. 

My doc also did say with celiac and a family history of thyroid problems that I would likely develop Hashimoto's at some point. Don't you just love genetics? 

Anyways, my plan is to just see if I get the celiac diagnosis on biopsy, and then after that if its positive I'll get it under control and then look at the thyroid again and if its negative then I will be going straight to the doc for more thyroid tests!

 

 

[LJR1989]

So I just found out I need to wait 18 weeks before even getting in to the specialist for my pre endoscopy consult, plus god knows long long for my endoscopy procedure. I'm trying to get in to a different specialist because I don't know how i will survive having to continue to stay on gluten. Any advice in dealing for that long? I dont want to cease eating gluten just in case I do get in to see someone else sooner. 

[cyclinglady]

Oh no!  That long?  Well. You are not the first to report this on the forum.  Best to try to get a cancellation appointment.    Put that phone number on speed dial!  

Not sure, but perhaps the timing of gluten intake can help.  Like having some before going to bed.  Anybody know if this would work?  

You just need a slice or two of bread daily.  I would not exceed that.  

I hope other members chime in.  Consider starting a new topic.  It might get you more responses.  

Edited February 15, 2020 by cyclinglady