Doctor ran test almost on a whim — tTG-IgA 128?!

[OrangesAndMelons]

I recently started a medication that's known to cause hypothyroidism, and in me, it has. As I increased the dose, my TSH went higher, in an almost lockstep fashion. On the most recent set of blood tests, after my TSH had gone over the threshold, my GP decided to chuck a coeliac test in there since hypothyroidism can be linked to coeliac disease, even though it seems pretty much certain the hypothyroidism is caused by the medication.

So essentially this test result was something neither he nor I were in any way prepared for. He's referred me to gastroenterology and ordered the same blood test again to check it wasn't a dodgy result, but what are the chances I don't have coeliac disease, with a tTG-IgA result of 128? I already have to follow a type 2 diabetes diet and an MAOI diet; I don't want to have to be gluten-free too!

[cyclinglady]

Welcome!  

The TTG IgA can be elevated due to other Autoimmune disorders, but just slightly.  Your result definitely requires you to be referred to a GI for further evaluation (e.g. small intestinal biopsies).  My guess?  Your odds that you have celiac disease is very high.  

I am a TD2, have celiac disease, and have many intolerances and allergies.  The good news is that you many be able to ditch the MAOI diet once your small intestine heals!  

[OrangesAndMelons]

Hi,

Thanks for your answer! Unfortunately I have to follow the MAOI diet for as long as I'm taking the MAOI, so essentially nobody's going to be inviting me round to dinner from now on…

This is a bit of a shock. I don't really have any clear-cut symptoms that I would've considered worth going to the GP about. I mean I'm always tired and I have a bit of IBS and so on but generally I put that down to the other things wrong with me and the medication I have to take for them (mostly the bipolar disorder).

Am I allowed to be a bit pissed off? ?

[Ennis-TX]

You should as cyclinglady suggested see about a GI consult to get the endoscope and biopsy, you can also see about a full celiac pannel.

>.> I pretty much eat no/low carb and gluten free. I do not eat dairy, grains, beans either. Pretty much a Paleo Diet with Keto Macros. >.> Though I make my own vegan cheese knock offs using nuts and oooflavors cheese flavorings and setting it up with agar, or gelatin into blocks or psyllium husk into "the cheese of perpetual melt" which stays the consistency of melted mozzarella all the time. 
I do not eat many types of meat, I have to take tons of digestive enzymes to eat them, and so I only eat small amounts of Lean meats, avoiding most pork and beef. I do eat some turkey bacon or turkey sausage sometimes and maybe a bit of salmon,  but most the times I make my own vegan versions with jack fruit and meat seasonings or seasoning my egg dishes with oooflavors beef or bacon drops to make it taste like meat. I also find bone broth from a powder form to be alright but have issues with real broths that are stewed too long.  Heck, I even make vegan meat bits by mixing flavorings and sauces with coconut flakes/shreds and baking them into crunchy meat tasting bits. I am always adding homemade veggie powders to these or adding super soft steamed/boiled veggies to my meals. Leafy greens, broccoli, and cauliflower are my staples. >.> I also sometimes use premade stuff like Califlour foods plant-based pizza crust and mix a bit of it in or even use for a quiche crust. 

To be honestly no one is really going to ask me out to eat either, for sake of easy digestion I blend these into egg dishes and slow cook them so they stay a soft quiche, I do a savory one and a dessert one that often contains leftover paleo baked goods that are sugar free blended it. >.> also use oooflavors in various desserts to enjoy flavors of things I can not eat. I even blend my grain and starch free keto bread into them sometimes. Lunches or generally a konjac based rice or creamy soup/porridge, using nut flours to thicken and either sweet with stevia/monk fruit, or some veggies and herbs for savory. Do the same for dinner. 


Not medical advice, but I gave up my meds bipolar years ago because I could not function at all in the zombie mode that the combo of Seroquel, Depakote, Zoloft, etc. They had me on, I also had to give up my ADHD meds almost 3 years ago when I lost insurance. Sorta found various foods that helped with issues. Cocoa/unsweetened dark chocolate twice a day helps with manic issues, CBD/Gerbs Hemp seeds twice a day helps with depression, suicidal thoughts, and anxiety. Magnesium, b-vitamins, vitamin D all are deficiencies caused by celiac damage, and cause make anxiety, and nervousness worse, I supplement twice daily still. I have some other things but that is my main regime. 

[OrangesAndMelons]

That's really interesting, thank you. I'm hoping not to have to change my diet dramatically; I went low carb (>20% calories from carbs) low calorie (>1200kcal) for a year and a half, after I was diagnosed with diabetes, to get it under control, which it did, and that was a real hassle.

I'm also bipolar, and remember only too well the feeling of being doped up on antipsychotics! In fact, it was the antipsychotics that caused the diabetes. That's why I point blank refuse to take antipsychotics any more, even when they threaten me with hospital (and though I've ended up in hospital, I've always managed to avoid being legally detained, so they can't force me to take them). I take lithium, which is what causes the hypothyroidism, plus an MAOI, which meant I have to follow the MAOI diet, and also lamotrigine, though I'm slowly weaning myself off that.

My GP told me that the gastroenterologists will do an endoscopy, and when I checked the guidance the NHS are meant to follow that does mean a biopsy too. I don't know how long the waiting list is, though. Not convinced they'll consider a full panel to be necessary with that tTG-IgA…

I really don't wanna be coeliac ? I don't even feel ill! I mean I'm always a bit lethargic but I put that down to my meds. And I have some gut problems in term time but not during vacations. I'm a full-time student at a very academically-intense university and I don't want to have to mess around with all this when I don't even feel poorly…

[Ennis-TX]

8 minutes ago, OrangesAndMelons said:

That's really interesting, thank you. I'm hoping not to have to change my diet dramatically; I went low carb (>20% calories from carbs) low calorie (>1200kcal) for a year and a half, after I was diagnosed with diabetes, to get it under control, which it did, and that was a real hassle.

I'm also bipolar, and remember only too well the feeling of being doped up on antipsychotics! In fact, it was the antipsychotics that caused the diabetes. That's why I point blank refuse to take antipsychotics any more, even when they threaten me with hospital (and though I've ended up in hospital, I've always managed to avoid being legally detained, so they can't force me to take them). I take lithium, which is what causes the hypothyroidism, plus an MAOI, which meant I have to follow the MAOI diet, and also lamotrigine, though I'm slowly weaning myself off that.

My GP told me that the gastroenterologists will do an endoscopy, and when I checked the guidance the NHS are meant to follow that does mean a biopsy too. I don't know how long the waiting list is, though. Not convinced they'll consider a full panel to be necessary with that tTG-IgA…

I really don't wanna be coeliac ? I don't even feel ill! I mean I'm always a bit lethargic but I put that down to my meds. And I have some gut problems in term time but not during vacations. I'm a full-time student at a very academically-intense university and I don't want to have to mess around with all this when I don't even feel poorly…

Well keep eating gluten daily til all testing is done.  I grew up thinking most my gut issues were normal, heck I had C not D so it was never even on my radar. But this disease is systematic and will cause other issues if left alone and not treated with the proper diet. See my list in the bottom of my post....welcome to my complications. You could at other complications with organs, messing up, T1D, or brain and nerve damage if it develops into gluten ataxia...then your school can be pointless when the brain damage makes it jumbled garbage you can not make sense out of. I took 4 years of computer classes and was doing programming, I started having issues, late in college and it kept getting worse. Nowadays all that stuff....I can read it and it makes no sense, the Japanese I knew no longer makes sense, complicated math no longer makes sense. Sorta fell back on cooking/baking gluten free and paleo cause that is all I can do nowadays that I like and have done in the past. 

[OrangesAndMelons]

If the next blood test comes back positive and so does the biopsy, I'm going to have to go gluten-free… I really don't want to have to do that though I'm going to keep hoping it's a false positive.

I'm sorry you've had all those awful complications.

[cyclinglady]

Your mental health issues may be very impacted by or even the root cause of your possible untreated celiac disease.  Researchers are studying the gut-brain connection.  Look at this as an opportunity to to improve your health.  Thankfully, celiac disease can be treated by the gluten free diet.  

https://www.health.harvard.edu/diseases-and-conditions/the-gut-brain-connection

and...you are allowed to be pissed off.  It is part of the grieving process.  All those little things bothering you (e.g. IBS, fatigue) most likely will resolve on A gluten-free diet and even improve your thyroid condition.  Did they check your thyroid antibodies?  (I have autoimmune thyroiditis too.)

[OrangesAndMelons]

Thanks cyclinglady ? Glad to hear it's okay to be annoyed ?

I think the bipolar disorder is probably here to stay… I have a strong family history of mental health problems including bipolar disorder, on the side that doesn't have gut problems ? 

I'm also autistic… LUCKY ME ?

Apparently the thyroid antibodies were fine.

[Ennis-TX]

22 minutes ago, OrangesAndMelons said:

Thanks cyclinglady ? Glad to hear it's okay to be annoyed ?

I think the bipolar disorder is probably here to stay… I have a strong family history of mental health problems including bipolar disorder, on the side that doesn't have gut problems ? 

I'm also autistic… LUCKY ME ?

Apparently the thyroid antibodies were fine.

Aspie here (Asperger syndrome), also a side note, the gluten-free diet helps people with autism. I will admit some of the old quirks are more ironed out. Not as much like "Sheldon" as I used to be and I do not have lockdowns anymore. 

 

[OrangesAndMelons]

Glad to hear the diet change improved things for you!

[OrangesAndMelons]

Googling around a bit is making me give the side-eye to what, up until now, I've assumed was dyshidrotic eczema…

[frieze]

https://www.verywellmind.com/gluten-and-bipolar-disorder-is-there-a-connection-562958      this one is not perfect, but a jumping off place.

 

for others, go to pubmed

[OrangesAndMelons]

Thanks frieze!

[Posterboy]

On 3/22/2019 at 7:57 AM, Ennis_TX said:

Magnesium, b-vitamins, vitamin D all are deficiencies caused by celiac damage, and cause make anxiety, and nervousness worse, I supplement twice daily still. I have some other things but that is my main regime. 

Oranges and Melons,

Ennis_tx has given you good advice.

Here is research about each vitamin/mineral in turn and how they can help depression.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4772032/

https://www.ncbi.nlm.nih.gov/pubmed/16542786/

https://www.medicalnewstoday.com/articles/286496.php

And this most recent study of Niacin used to treat Bipolar patients.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5852710/

The describe the need to continue taking Vitamins as a Vitamin dependency and for some of us in a subset of the population the need for vitamins are higher and why we do better on supplementation.

I like Ennis_tx have taken Magnesium, a good B-complex and Vitamin D to help most of my depression symptom's. 

Ennis_tx's example of a bucket with a hole in it . ..is a good one.

quoting their conclusion on the use of Niacin to treat a subset at least of Bipolar patients.

"With NA (aka Niacin), currently at 1000 mg three times daily, the patient has for over 11 years been stable and in a good mental health condition without any psychiatric drugs. The most probable explanation is that this is related to specific genetic factors. Such a high-dose need of an essential vitamin is sometimes described as a vitamin dependency'.

I hope this is helpful but it is not medical advice.

Posterboy,

[OrangesAndMelons]

Thanks Posterboy ?

When I was struggling to get any psychiatric care a while back, I self-treated with Omega-3-6-9 and megadose B vits and vitamin D, and they didn't seem to help much but I'm always open to trying.

I'm hoping my GP will be happy to run a test for vitamin deficiencies if I turn out to have celiac disease, and then I'll know what I'm working with.

I'm still kind of hoping somebody's going to turn up and say they've come across people scoring as high as I did on the tTG-IgA test who turned out not to have celiac disease… I called Coeliac UK and the woman I spoke to wouldn't be drawn on it, instead giving me lots of (helpful) advice about living with coeliac disease. Which doesn't bode well. I feel like I'm still at a stage where this could turn out to be a false alarm but the more people I speak to the more I get the impression it's a foregone conclusion…

[Posterboy]

Oranges and Melons,

Add you some Magnesium Glycinate or Magnesium Citrate with meals to your regimen and I think you will be happy with your results.

B-Vitamins are best in divided doses I.E with meals since they are water soluble so even high(er) commonly referred as the megadoses you mentioned. ...like the bucket with the hole in it analogy. ..you are still half low all the (rest of the day).

B-Vitamins if not taken at least 2/day will leak out and you will be low at least 1/2 the day ..despite the seemingly high amount(s). ... see this research . .and how a new base line is reached after 3 months.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2738337/

quoting the baseline reference and the best way to take B-complex Vitamins ... but read it all when you get a chance

"Nutrition and depression are intricately and undeniably linked, as suggested by the mounting evidence by researchers in neuropsychiatry. According to a study reported in Neuropsychobiology,[42] supplementation of nine vitamins, 10 times in excess of normal recommended dietary allowance (RDA) for 1 year improved mood in both men and women. The interesting part was that these changes in mood after a year occurred even though the blood status of nine vitamins reached a plateau after 3 months."

I hope this is helpful but it is not medical advice.

2 Tim 2:7 “Consider what I say; and the Lord give thee understanding in all things” this included.

Posterboy by the grace of God,

[OrangesAndMelons]

Thanks I was taking them twice a day with my other meds. Lurid yellow pee galore ?

I'm wary of taking magnesium salts with my lithium — I'd want to ask my doctor about it first, I think, in case it could mess with my levels.

[Posterboy]

2 hours ago, OrangesAndMelons said:

Thanks I was taking them twice a day with my other meds. Lurid yellow pee galore ?

I'm wary of taking magnesium salts with my lithium — I'd want to ask my doctor about it first, I think, in case it could mess with my levels.

 

Oranges and Melons,

You can't take Lithium and Magnesium in the same/meal etc. . ..but if you take them at different times of the day .. then you could see a benefit.  see this research about how lithium effects Magnesium

https://www.ncbi.nlm.nih.gov/pubmed/6813887

and this livestrong article about transferring to Magnesium is better longer term when you might be able too. but always follow your doctor's orders but as long as they are both not taken together in the same meal the risk is minimal... and magnesium can highlight the benefit of taking lithium alone.

https://www.livestrong.com/article/386198-magnesium-as-treatment-for-bipolar-disorder/

the Lurid yellow pee is from your body bypassing B-2 aka Riboflavin. . .you might want to go to start taking your B-Vitamins separately.

Again I hope this is helpful but it is not medical advice.

Posterboy,

[Awol cast iron stomach]

On ‎3‎/‎22‎/‎2019 at 6:19 AM, OrangesAndMelons said:

Hi,

Thanks for your answer! Unfortunately I have to follow the MAOI diet for as long as I'm taking the MAOI, so essentially nobody's going to be inviting me round to dinner from now on…

This is a bit of a shock. I don't really have any clear-cut symptoms that I would've considered worth going to the GP about. I mean I'm always tired and I have a bit of IBS and so on but generally I put that down to the other things wrong with me and the medication I have to take for them (mostly the bipolar disorder).

Am I allowed to be a bit pissed off? ?

You are allowed to pissed off, shocked, grief you name it. You will probably go through several emotions if this is confirmed by GI and endoscope. I was misdiagnosed as IBS for 20 plus years. So the IBS misdiagnosis decades before the Celiac diagnosis-never surprises AWOL!

[Awol cast iron stomach]

19 hours ago, OrangesAndMelons said:

Googling around a bit is making me give the side-eye to what, up until now, I've assumed was dyshidrotic eczema…

Ahhh.. yes the eczema.....

Eczema, hives, keratosis pilaris, Puppp rash yep many skin manifestations..... it turns out being a strict gluten-free celiac (completely gluten-free home) now my body quickly and clearly goes DH with cc

I of course avoid cc

Keep us posted and good luck

Edit: I wanted to add this former post for you about the lovely lifetime skin manifestations many of us have had- oh I forgot I have had Shingles 3 times-DH variation or shingles? At this point I tell myself it really doesn't matter. Likely another missed opportunity. ?

 

[OrangesAndMelons]

1 hour ago, Posterboy said:

Oranges and Melons,

You can't take Lithium and Magnesium in the same/meal etc. . ..but if you take them at different times of the day .. then you could see a benefit.  see this research about how lithium effects Magnesium

https://www.ncbi.nlm.nih.gov/pubmed/6813887

and this livestrong article about transferring to Magnesium is better longer term when you might be able too. but always follow your doctor's orders but as long as they are both not taken together in the same meal the risk is minimal... and magnesium can highlight the benefit of taking lithium alone.

https://www.livestrong.com/article/386198-magnesium-as-treatment-for-bipolar-disorder/

the Lurid yellow pee is from your body bypassing B-2 aka Riboflavin. . .you might want to go to start taking your B-Vitamins separately.

Again I hope this is helpful but it is not medical advice.

Posterboy,

I'll talk to my doctor. Thanks for all the info

[OrangesAndMelons]

1 hour ago, Awol cast iron stomach said:

You are allowed to pissed off, shocked, grief you name it. You will probably go through several emotions if this is confirmed by GI and endoscope. I was misdiagnosed as IBS for 20 plus years. So the IBS misdiagnosis decades before the Celiac diagnosis-never surprises AWOL!

Hehe — I've had IBS for so long I stopped mentioning it to doctors because I know there's nothing they can do. In fact I'm so used to it, when the GP asked if I had any GI symptoms after this test result came through, I said no, before remembering about the IBS! 

[OrangesAndMelons]

53 minutes ago, Awol cast iron stomach said:

Ahhh.. yes the eczema.....

Eczema, hives, keratosis pilaris, Puppp rash yep many skin manifestations..... it turns out being a strict gluten-free celiac (completely gluten-free home) now my body quickly and clearly goes DH with cc

I of course avoid cc

Keep us posted and good luck

Edit: I wanted to add this former post for you about the lovely lifetime skin manifestations many of us have had- oh I forgot I have had Shingles 3 times-DH variation or shingles? At this point I tell myself it really doesn't matter. Likely another missed opportunity. ?

 

I saw that post earlier! — but when I clicked through I could only read a three line snippet.

 

What's cc?

I can't get a very good picture, and typically, my dyshidrotic eczema is as mild as it gets right now (extremely mild!) but here's my crappy itchy fluid-filled blistery things anyway…

Edited to add: I once had them all over the tops of my feet but was on a camping holiday so assumed it was a weird reaction to my sandals. And this is why dyshidrotic eczema has never felt quite right, because it's supposed to be on palms and soles.

But it doesn't really match DH either.

[Alaskaguy]

Orangesandmelons, I have had those also!  Always on my palms, or on the edges of my palms, or occasionally on the inside of a finger.  Not many times, and not many at one time (often just a single blister), but while they are itchy, they are distinctly different from DH --- for one thing, mine never scab-up, just slowly go away without seeming to break.  But those clear blisters on the palms have not given me even 1% of the grief that I have had from DH, so I usually ignore them and rarely if ever mention them.