So I've been glutened....

[Jmg]

For the past two weeks now I've had bloating, stomach cramps, then the itchy scalp and now I've the swollen lymph nodes have returned and I'm experiencing dizzy spells and a racing heart when standing up. So now I know. Somehow the dark power of gluten has once again returned to the land.

But I don't know. Despite being careful, despite rarely if ever eating out, having given up drink, cooking from one pan etc etc. I still don't know wtf it was that I've eaten that's caused this. And that's what's driving me up the wall...  All I have are questions (and bloating!).

Was eating the gluten-free trifle that my sister had prepared for me a mistake? Could it have been cross contaminated? Am I really supposed to abstain from anything I didn't personally prepare?

I've been eating 'gluten free' processed foods and I've read that they can have small amounts of gluten, so is it that? Do I have to ditch gluten free sausages or gluten-free oat based biscuits?  But *throws toys out of pram -  I love them and I've already given up so much.  

If the full brain fog chest pains etc etc hasn't returned does it mean there was just a tiny amount or do I react differently now than last time I had it?

Is it really gluten or am I developing further intolerances. Is dairy completely out of the picture now? Am I back to food diarys and exclusion once again?

Am I really angry and down about this, or is that the gluten effect beginning to take hold? Where does feeling down end and gluten mediated depression begin?  

Aargh! I think the questioning and uncertainty are at least as bad as the actual gluten itself.

[Estes]

Oats are a cousin to wheat.  It could simply be the oat biscuits.  Even if they say gluten free, many of us probably react to oats too.  I had trouble in the beginning from Kind bars due to the oats.  Do you like any rice based biscuits?

[Jmg]

3 minutes ago, Estes said:

Oats are a cousin to wheat.  It could simply be the oat biscuits.  Even if they say gluten free, many of us probably react to oats too.  I had trouble in the beginning from Kind bars due to the oats.  Do you like any rice based biscuits?

After I first went gluten free I thought that I mildly reacted to gluten-free oats, but it wasn't anything like this. 

I wouldn't have a problem with rice based biscuits I think, but here in the UK the majority of gluten-free biscuits are oat based. So if I do have to cut them out I'm losing a big slice of my 'treats'

[Gemini]

Please remind of how long you have been gluten-free?  If you are still fairly new to the game, then it could be just one too many biscuits or processed foods right now and that will get better as you heal.  I also have a dairy intolerance that never completely went away.  I can do dairy lite but some times, I guess I have just enough extra dairy in my diet and wham! The stomach cramps start and I am feeling sluggy and off for a few days.  You just never seem to know how much is too much sometimes.  I am not against processed foods for celiac disease, either.  Carbs are a good thing! They are vital to brain function and happiness.

It could also have been a minor mistake on your sister's part and you were indeed cc'd.  Yes, you can eat food others have made BUT they need to be trained well and remember that training.  I have only 2 people who are not celiac I trust to not make me sick.....out of many others who mean well but just don't remember or understand the whole thing.  But you have made me think about doing a lovely gluten-free trifle...what a great idea!

I would scale back and just keep track of what you eat so you can see if there is a correlation.  I am not sure you need to re-do the diary.....just mentally keep note of food and how you feel for a couple of weeks.  Hang in there because you will get even better and down the road, the glutenings/getting cc'd will be tolerated much better.  You will also be doing better mentally because you will be more comfortable with the diet/lifestyle.

 

[Jmg]

I think its almost two years since I finished the challenge. I haven't been doing the bone broths,  home made sauerkraut, or probiotics recently. So maybe that's something I need to revisit. I thought I was healed and could now be a bit more expansive in my diet.

The trifle was lovely! It was a favourite before all this and I couldn't resist it. 

I had thought I was doing a lot better physically than mentally, which is possibly one reason why I'm so gutted now I'm reacting...

Anyway thanks for the advice. I've enjoyed coming on here recently and suddenly after reading so many other accounts I realised I needed to rant

 

 

[Gemini]

To be honest, I never ate bone broths and sauerkraut while healing and didn't notice I needed to.    However, the probiotics are something that should be taken forever because our guts, or Microbiome as they so fancily call it nowadays, has been compromised so badly by Celiac, that I feel its a win-win thing to do.  I always run smoother when using them. I sometimes stop for about a month to give it a rest and then resume them at some point. You can't go wrong with good bacteria, can you? 

Do you take digestive enzymes?  This is something that is under utilized. Since we have compromised digestion in varying degrees, I find that these really do the trick when eating larger or heavier meals.  I used them with every meal in the beginning and now, after 11 years, use them like I stated.....for large or heavier meals. I do not think people with celiac ever have digestive prowess in the 100% range and it helps when you are bloated or suffering from those mystery symptoms that come out of nowhere.  Every little bit helps.

You know, the normally very polite and reserved English really need to rip into a rant now and again.  They actually make you feel a little bit better about everything and everyone deserves that!  Life can be so frustrating at times..... 

[icelandgirl]

Oh goodness...I'm sorry.  ((((((HUGS))))))

I really feel for you and hope that you feel better soon.  It is dreadful having it happen and so hard when you don't know what got you.  

I second Gemini in saying do keep taking a probiotic...I really do think it helps.  Take good care of yourself...rest when you can.  Hope you are back to feeling good soon.

[jalvarez1010]

I am so sorry for how your feeling.  I can sympathize; over time I notice I couldn't have any type of gluten free products.  I read that since you don't have villi in your small intestines you have no defenses, meaning even the tiniest bit of exposure causes a flare up.  I even have to be careful when I purchase products by reading the labels to ensure it says manufactured by a nut, soy, milk and wheat free facility.  Be very careful, unfortunately

[Jmg]

Thanks for the kind responses 

Last night I went out and had a black coffee, non decaf.   Big mistake... I started getting gas almost immediately and it went on for the rest of the evening. It seems like anything which might annoy my stomach at the moment results in churning and an uncomfortable feeling.

the weird thing is that I ate a huge lunch including gluten-free bread earlier with no effects whatsoever. Just as well as I couldn't face food last night and am not enthused with breakfast now.  C

i think I'll dig out some probiotics and try and eat simply for a few days and hope things settle down. I'm just worried that something has changed and this is the new normal... That would suck...

 

[jalvarez1010]

Coffee is a no-no for me!  I actually gave up coffee since my diagnosis back on 2/2016.  I was diagnosed by a biopsy in the stomach...no villi.   Coffee is a stimulant to the GI system and it really irritates your GI when you are having a flare up.  I was tested by stools and was informed I barely had good bacteria in my gut which is typically for people with celiac. I went on a high dose of probiotic (just started) twice a day, multivitamin, lots of fermented vegetables like sauerkraut, kimchi, miso soup and tons of bone broth.  I am going to a local farm today to pick up organic bones to make my broth.  I am so desperate to heal my gut, not to introduce gluten but to be able to tolerate an exposure without being knocked out by it....Eat very light, I stick to vegetable juice, resistance starch food such as banana, apples, potatoes boiled until my diarrhea subsides.  I am currently in a flare up stage; did something and I have been glutened

I am on day 7 and my symptoms peak after a few days, around day 4-5 and it last a few days of Diarrhea, nausea, sensation of feeling full, back pain in the rib cage on left side and hip/lower back pain on left side.  Its horrible!  I feel weak right now due to the diarrhea and since I am not hungry it makes it worse.  Hope this gets better.

[Jmg]

Yeah I did all the bone broths and sauerkraut after my challenge. Although I wasn't very good at making sauerkraut... Its summer here now so I've eased up on the bone boiling, plus my local butcher is struggling to obtain them. As you say healing to the point where microscopic cross contamination doesn't get you would be a big win. 

I was ok with coffee until last few days. I drank decaff black and would have several cups a day without issue. I'll be gutted if I can't handle it any more. I hadn't realised you could get gluten-free miso soup. Will have to look for that

 

 

[Awol cast iron stomach]

Jmg I am sorry to hear you are unwell. You have been so kind and helpful to me on the boards here. You deserve the time to rant too.  

Everyone's suggestion of probiotic is helpful. I have taken them since the 1990's in spurts as needed but was told by my DC after this March glutening I should take it daily "for life". My local store ran out, (I buy the type that must be refrigerated so the manufacturer does not ship direct to customer.) I was ok first day without it but by day 3 I knew I had to locate some for the probiotic/ enzyme blend was necessary for me. I have still not healed well enough yet to be without.

As others said it could be cc from sis or the food  industry. Within the food industry even with parameters in place errors can be made- hopefully not too often.  Often rare though especially if not designated facility.  It is hard to know some days what it was. I do hope you get better soon.

Yes I do think it can affect the brain/mood. Happens to me a large amount can be immediately,  but a smaller amount by day 2 after glutening. I want to ban gluten everywhere in my environments, unrealistic I know,  but have only been able to do that at home. 

Be kind and patient with yourself at this time as you would tell me. ((((((Hug)))))

[GFinDC]

Hi JMG,

Since it's easy, and always fun, I'd blame your sister. That's what I do. 

But seriously, if it's an ongoing problem, rather than an isolated incident stick with your first guess.  Then test it.   So get rid of the oat bread or the sister (her food) or anything that is a consistent part of your diet and you suspect could be the problem.  Of course processed foods are the most likely issue always.

It's easy enough to drop back to a very few foods for a few days and see if things improve.  Eating with celiac isn't about having the most exciting diet, it's about eating a medically safe diet.  So it can be boring sometimes.  That's ok, being in pain is exciting but not so fun.   Boring is fine.

You might ask your sister what brands of flour she used, and other ingredients.  Then check on those products for possible gluten issues.  If they turn out to be possible problems, make a note of it so you can avoid them in the future.

My own sister has been gluten-free for years but she has made me sick several times with her "creations".  It really is best to trust your own cooking and nobody else's for at least 6 months as you are getting used to the diet and healing.  Then slowly branch out and add things in maybe 1 new item in a week.  Slow and controlled diet changes are the way to go.  Boring but safe.  Happy but slow.

 

 

[Jmg]

The bloating has, if anything, got worse. It seems better when I'm lay down, when I stand it gets worse. Although the lymph swelling has gone down so maybe I'm through the worst. Hope so anyway...

I never used to get a great deal of GI symptoms. Certainly not so serious as the other stuff. It's making me wonder if I just react differently now having been gluten-free for some time. I've noticed lot's of you saying that reactions seem to change over time. Of course its possible the other stuff was masking the GI things. I almost dont trust my memory of those times anymore because a whole chunk of my life seems to have been lived through a brain fog.

Tomorrow I'm thinking of going away for a couple of days, maybe just taking some ultra simple food with me so I can try and settle my stomach by boring it into submission

 

 

 

[GFinDC]

That sounds like a plan JMG.  If things aren't working then make a change, hopefully a positive change.  It seems to me we have more noticeable symptoms sometimes after being gluten-free a while.  I made a mistake last night and ate some tuna canned in water.  It definitely wasn't boring.  I usually have more sense than to eat tuna canned in water but screwed up last night.  They canned  it in broth of some sort.  Ingredients say vegetable broth and soy.  Yuck, not good for me.  It sure tasted good though, just ouch.  I am not saying it had gluten in it, but it does have soy and some kind of unnamed veggie monsters.  So it could be soy, or carrots or some other disgusting vegetable that got me.   Not all celiacs have additional food intolerances beyond gluten, but some do.  My gut could testify to that.  Anyway, if you have bloating, cut out all carbs and sugar for starters.  And try peppermint tea or Altoids.  Over here we have something called Pepto Bismol that helps soothe gut pain and another neat thing called aspirin.  And gluten-free beer as needed.

 

[MonaDan]

On 25/06/2016 at 0:26 PM, jalvarez1010 said:

miso soup

Miso soup has gluten in it, doesn't it? =/ I know that I've been avoiding it, which is a big shame because I adore miso!

[Jmg]

11 hours ago, MonaDan said:

Miso soup has gluten in it, doesn't it? =/ I know that I've been avoiding it, which is a big shame because I adore miso!

I thought so till I saw Jalvaraz's post. Turns out there's a gluten-free version

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