seeking advice for gluten challenge + symptom question

[Agrippina]

Hi! New to the forums, and I'm doing the gluten challenge in preparation for the blood test. I haven't had gluten for about two months, been feeling much better (extreme anxiety disorder has calmed down a lot, chronic pain has lessened, and things are much better in the bathroom). Ate gluten yesterday and today, and I'm already in pain again. Six more weeks of this! Ugh!

1. Does anyone have tips for making the gluten challenge less miserable? My worst symptoms are anxiety and pain (lasts most of the day, feels like I have broken glass in my intestines/bladder, mostly bearable but it's especially bad in the morning). I have bathroom issues too, but I figure there's probably no getting around those.

I'm eating very healthy otherwise, mostly fruits/veg and poultry/eggs, cooking all my own meals, no dairy, following an anti-inflammatory diet. I'm trying to keep my anxiety down with breathing exercises and just avoiding stress. Not currently working, so I have plenty of self-care time.

2. I'm seeing conflicting info about the gluten challenge - some sites say 6 weeks, some say 8, some say it can take up to 3 months. Has anyone actually needed to go longer than 6 weeks? If I only do 6 weeks, can I trust the result? If I'm going to torture myself for this blood test, I want to make sure I get an accurate result.

3. I'm also wondering if anyone has found info on how gluten affects your balance of cortisol and oxytocin. I ask about oxytocin specifically because I have a particular intrusive thought when I'm hanging out with my partner, perfectly happy one minute, and the next minute I'm completely convinced she hates me. Like a hormonal switch is flipped or something. That hasn't happened since I stopped eating gluten, but today (2nd day of the gluten challenge) it happened again right after I ate pasta. Doesn't seem like a coincidence.

[trents]

6-8 weeks is what the Mayo Clinic recommends for the pretest gluten challenge. If you were to jump right to the endoscopy/biopsy it would only be 2 weeks.

[cristiana]

Hello Agrripina

I totally sympathise with your anxiety issues.  I posted something about anxiety on another thread the other day - I hope it might help (see below).  Your vitamin and mineral levels may be low now which can really affect your mood  -  can you get these checked, particularly B12 and iron?  If they are low, or even low normal, you can start addressing those now,  but please under medical supervision as too much iron, for example, can be very dangerous.

Re: stomach pain, I found sipping ginger in hot water very helpful.   Re: bladder pain - I get a lot of UTIs and I find paracetamol (I think this could be Tylenol in the US?) very helpful.  I don't know what is causing your bladder pain but it might be worth checking you don't have a UTI - and in any case, keeping well hydrated, avoiding citrus juice, caffeine and hot, spicy food, should help.

Cristiana

I developed, in the space of a few weeks, the most crippling anxiety, disturbing thoughts and phobias in the run up to my diagnosis.  I remember trying to fold my children's laundry one afternoon and found it almost impossible. 

I went to see a doctor who ran some tests and saw I was very anemic.  Thankfully she didn't just prescribe me anxiety medication, although that is all I thought I needed at the time!  I went undiagnosed with coeliac diseas for another six months as it took that time for my gastric symptoms to develop, but thankfully in that time addressing the anemia helped to some extent, as well as reading books* on anxiety and depression that helped me to understand what was going on. 

The anxiety was such an alien feeling to me I actually had to google how I was feeling to realise what it was.  It was nothing like pre-exam nerves, it was a feeling of doom and racing [and intrusive] thoughts. 

Interestingly, when the anxiety first struck, my B12 levels were also very low.  On more than one occasion at this time I noticed I calmed right down after drinking a couple of pints of milk or having a Berocca drink!  The only thing I can think is that both are good sources of B12?

When speaking to an insurance nurse a few years ago I was trying to get anxiety removed from my exemptions.  The nurse told me straight off that anxiety was common amongst undiagnosed coeliacs. I am just so grateful that my doctor started looking at the wider picture when I turned up at her office in 2012.  

*The books that helped me were Paul David's book At Last A Life,  Dr Steve Llardi's book The Depression Cure and Dr Tim Cantopher's book, Depressive Illness, Curse of the Strong.

 

Edited January 5, 2022 by cristiana

[Agrippina]

5 hours ago, cristiana said:

I totally sympathise with your anxiety issues.  I posted something about anxiety on another thread the other day - I hope it might help (see below).  Your vitamin and mineral levels may be low now which can really affect your mood  -  can you get these checked, particularly B12 and iron?  If they are low, or even low normal, you can start addressing those now,  but please under medical supervision as too much iron, for example, can be very dangerous.

Re: stomach pain, I found sipping ginger in hot water very helpful.   Re: bladder pain - I get a lot of UTIs and I find paracetamol (I think this could be Tylenol in the US?) very helpful.  I don't know what is causing your bladder pain but it might be worth checking you don't have a UTI - and in any case, keeping well hydrated, avoiding citrus juice, caffeine and hot, spicy food, should help.

Thank you! This is really good info. I've been feeling so much better since I went gluten-free, I'm kind of scared that going back on will make my mental health plummet again. I'll try the B12 and ginger ... don't currently have a doctor or insurance (had some bad experiences and the US insurance system is messed up), so I'll steer clear of iron supplements for now, maybe just make sure I'm eating my greens.

[cristiana]

That's very wise, its not usually an issue with B12 but iron can be very dangerous.  Yes, I need to eat more greens too - thank you for the reminder!

I get gastritis when I am glutened (burning stomach pain) and it was also a particular issue when I was first diagnosed, when my coeliac disease pain was at its worse.  I find that sometimes, a day or two of OTC omeprazole can give some relief, it kind of works as a circuit breaker to my pain, but it shouldn't be used regularly unless advised by a doctor as there are drawbacks.

Also, stay clear of NSAIDs if you can - they won't help a sore stomach.

 

Edited January 5, 2022 by cristiana

[trents]

Be aware that greens are also high in oxalates which can cause problems for some people. Green leafy vegetables are among the best plant sources of iron but no plant sources of iron are as effective as red meat. The iron found in red meat, or "heme" iron is much more assimiable than plant source iron.

[cristiana]

Also, Aggripina, forgot to say, Paul David's anxietynomore website, that accompanies his book, is very good.  Something you can access instantly via the internet.  

Cristiana

[Agrippina]

57 minutes ago, trents said:

Be aware that greens are also high in oxalates which can cause problems for some people. Green leafy vegetables are among the best plant sources of iron but no plant sources of iron are as effective as red meat. The iron found in red meat, or "heme" iron is much more assimiable than plant source iron.

Got it. I've been avoiding red meat on the anti-inflammatory diet, but I'll give some lean red meat a try. Thanks!

[Scott Adams]

This article might be helpful, however, I would not recommend #2, taking AN-PEP enzymes during a gluten challenge, as they are designed to break down gliadin and could taint any test results (even though it's doubtful they would fully break down that much gluten):

 

[RMJ]

If you don’t have a doctor or insurance, how are you going to get the blood test?

I ask because if you’ve only been off of gluten for about two months and you do have celiac disease you MIGHT still get a positive antibody test now.  You wouldn’t be able to believe a negative because of two months gluten free, but you could believe a positive. I don’t know if a doctor would be willing to order a test now and repeat after the gluten challenge if negative now. It’s hard enough to get doctors to order celiac tests once!  If you’re ordering the test yourself (possible in most US states) you could do it twice but you’d have to pay for both.

Please try to get the full celiac panel, TTG IgA, TTG IgG, DGP IgA and DGP IgG.  Some doctors only order the TTG. Any one of them can indicate celiac disease.

 

[trents]

There is also the option of ordering a home celiac disease test kit from Imaware for about $100 USD. Bujt you would still need to go back on gluten for a couple of months before doing the test.

[Agrippina]

39 minutes ago, RMJ said:

If you don’t have a doctor or insurance, how are you going to get the blood test?

I ask because if you’ve only been off of gluten for about two months and you do have celiac disease you MIGHT still get a positive antibody test now.  You wouldn’t be able to believe a negative because of two months gluten free, but you could believe a positive. I don’t know if a doctor would be willing to order a test now and repeat after the gluten challenge if negative now. It’s hard enough to get doctors to order celiac tests once!  If you’re ordering the test yourself (possible in most US states) you could do it twice but you’d have to pay for both.

Please try to get the full celiac panel, TTG IgA, TTG IgG, DGP IgA and DGP IgG.  Some doctors only order the TTG. Any one of them can indicate celiac disease.

There are businesses that you can order labs through - e.g. Walk-In Lab, Any Test Now. And the home test kit Trents mentioned. It's probably more expensive than doing it through a doctor, but the tests go to the same labs a hospital would send them to. And yes, I'll be sure to get the full panel!

[RMJ]

If you order the labs yourself, and do it now, you also don’t have to worry about a doctor giving up on a possible celiac diagnosis if tests are negative, because you can do the gluten challenge and order them again.

[Agrippina]

56 minutes ago, RMJ said:

If you order the labs yourself, and do it now, you also don’t have to worry about a doctor giving up on a possible celiac diagnosis if tests are negative, because you can do the gluten challenge and order them again.

That's a good idea. Thanks! I'll just have to think about it financially.

[Wheatwacked]

Call it Devil's Advocate but why do you need medical confirmation of what you already know: you cannot eat wheat, barley or rye because it makes you sick.

Consider taking vitamins to supply 100% of essential vitamins because you need more to heal. Look at your potassium, choline, and folate intakes, most Americans do not eat enough.