clafran

Howdy friends,

I'm working through a probable glutening as I type.  Although I have been fortunate not to have gotten glutened too often in the past 8 months I've been gluten-free, I have noticed that it takes anywhere from 6-12 hours for me to register any sort of symptom.

As far as I can tell, my metabolism is a bit sluggish -- always has been.  I know some of you can tell very quickly when you've been glutened; does anyone else get an unpleasant surprise much, much later???

Thanks, and eat clean!

Cathy

This isn't exactly a sleep problem, but it's been occurring more frequently, at least in the last 6 months since I've gone gluten-free.  I have recurring nightmares of intentionally eating something with gluten, or eating something that I find out just after eating it that has gluten.

Anybody else in this same boat?  Yes, there are a few other stressors in my life, but I find it odd that I'm dreaming about gluten.

Last night, I was dreaming that I was eating French fries (from McDonalds -- a no-no IRL, obviously) when I grabbed one that was attached to a 'chicken' nugget.  I ate it, but then tried to spit it out and/or make myself vomit.

There have been at least 2 other dreams of this nature.  Is this normal?  Will it stop?

Thanks!

Cathy

Sorry to hear you had such a rough go!  The nightmares are new for me (although most symptoms are -- only 6 months since going gluten-free), but that has become the first sign of a glutening for me.  So you're not alone on that issue.  No sleepwalking for me, at least that has been reported...  Hope you flush it out quickly!

Cathy

I've only had one period since going gluten-free, and it was a nightmare.  The PMS was insane -- I felt like I was in "The Excorcist" and the cramps were the worst I've had in *many* years.  I haven't been on the pill in over 10 years; we have two kids.  I'm early 40s, and menopause comes late in my family  So I have a ways to go with periods, yet.  Hopefully, they will calm down.  If not, my family doctor is very forward-thinking (and male!), and he will happily get my hormones monitored if we think something is not quite right...

All I know is that I'm less than 2 weeks away from round two.  My husband has orders:  chocolate and wine.

Take care of yourself!

Cathy

Also, forgot to mention I've been fairly regular almost my whole life, albeit with longer cycles (around 35-42 days).  Minor infertility, which my family doctor got me through with progesterone supplement shots.  5 miscarriages total, two healthy kids....  

I have no official diagnosis, as I went gluten-free before I knew that I needed to get tested first. I get very similar symptoms to what happened to you...feeling hot and flushed, and "hung over" in the morning....tired, headache, in a fog. But with the extra fun rash to go with them. So needless to say I will not be doing a gluten challenge.

 

No compulsion to cheat here...cross contamination even makes me a little itchy and rashy. My "big one" was when I assumed all tamari was wheat free and found out the hard way that Tree of Life tamari is NOT. My bad for not reading the label carefully. After that I have no interest in eating wheat ever again.

"hung over"  -- absolutely!!!  I'm thinking "gluten hang-over" or "gluten flu" are two things that most accurately describe how I felt.  Plus, I have a slow metabolism, so it took a while for me to feel sick.  I am really starting to feel better, and it's Wednesday night -- I got glutened Saturday night!!  Unreal...

Thanks so much to all of you -- I appreciate your support.  That's why I joined the group... 

I know the feeling!  Were you ever dx'd by a doctor or did you just decide to go gluten free?  I have a bunch of symtoms and pretty much self dx'd myself because when I went gluten free for close to 3 months, almost every symptom went away.  I accidentally glutened also - eating out at restaurants - I can totally identify with the "hangover" feeling.  Not sure what it was that I ate and I had wine instead of gluten free cider and back in the day I could easily drink 3 nice glasses of wine and feel fine.  Now I get very ill from just one glass.  I am back on gluten again so I can get an endoscopy on Friday.  My tummy is starting to hurt but not like it did before (although I am eating gluten, I am eating fruits, yogurt and taking a good probiotic - something I never did before - never touched fruit or veggies - just at processed junk 24/7).  And all my other symptoms - fatigue, bags under eyes, rashes, itchy eyes, achey joints - all came back. 

I have an actual diagnosis, although until my first "glutening," I never recognized any GI symptoms or reactions.  This was a HUGE wake-up call for me.  I feel like the diagnosis is real now, which is bittersweet for me...  my mom also has an official diagnosis, but her DH issues were very evident as soon as her celiac manifested...

Thanks so much!

Please bump if this isn't the right forum/thread.

I have been gluten-free for more than two months, and I can honestly say I feel the difference.  I never had (discernible) tummy troubles, but tons of "other" issues.  The most concrete difference is my mood, my focus, and my energy level.   Eating at home is fine; DH and children are more than supportive, and we are working (slowly) toward testing the kids and having a completely gluten-free home.

So this weekend, I had a chance to see some old friends, and we went to Buffalo Wild Wings.  I knew right off the bat most things would be off-limits, so I settled on something "safe:"  chips and "molten buffalo dip."  Little did I know (and failed to ask), the fryers are multi-use, and the cheese dip came out in a deep-fried flour tortilla bowl.  

I decided to run a test, as I had no idea what kind of symptoms I might exhibit, should I be accidentally glutened.  Long story short, I found out.  In addition to the cross-contamination from the bowl, the cheese dip was evidently loaded with gluten.

The next morning, I thought I had a hangover.  I only had two ciders!  I felt hot, flushed, almost like a fever.  My ankles got sweaty!  After a bit, I was sick to my stomach.  I honestly though (hoped?) it was stomach flu, but no one else in my house got it, including two small ones who must stay in constant physical contact with me.  My mom, who is Celiac/DH, was sure immediately that I had gotten glutened.

I felt like crap the rest of the day, and the following day was a little rough for this high school teacher.  I finally feel like I'm on top of it (two days post-glutening), although I"m still really tired.  Despite my fatigue, my sleep has been poor, and it's been harder to fall asleep.

Sorry for the ramble -- I just didn't know where else to turn!  I know I can't be 100% sure, but I really do feel that I got glutened -- and suffered the consequences.  And no, before you ask, I will NEVER do that again!!

And a small post-script:  My MIL sent a lovely package of chocolates for us and the kids -- some of it has gluten, but all labels warn of cross-contamination on machinery.  Rats.  South Bend Chocolate Factory goodies.... *sigh*  That's OK.  I need to lose weight anyways, right?

Love and good health to all,

Cathy

Hi Slee...

I am in your boat, to some extent -- my son is 6, skinny, frequent hives, "former" milk allergy, GI problems, sinus issues... I was just diagnosed (via blood test only) earlier this month, but I'm also the daughter of a full-on celiac with DH. My husband and I have been debating whether or not to test our son, and our 2.5 year old daughter, too. From the previous posts, I think I will. Our family practitioner is super outside-the-box thinker, so he will order any tests I think are beneficial.

Thanks for posting this -- you give me confidence!

Good luck.

Cathy

Wow, I am really so very humbled and grateful for all of your responses. I think I'm going to avoid the expense and just go gluten free. I am truly blessed, because my husband insists that once we eliminate the gluten currently in the house (throwing out, donating, etc.), we will go gluten-free. Very curious to see how my kids react: 6 year old boy (with a handful of attention "issues") and 2.5 year old girl.

It hasn't been very difficult. We enjoy natural and whole foods, and we do most of our own cooking anyways. I survived my first post-diagnosis grocery shopping trip, but was a little panicked by the end. We don't eat out very often, but that still concerns me.

On the plus side, I think my mom is happy to have a partner in health. She's not happy I have celiac, but she's relieved that I know and that I can reverse/prevent damage. And now she won't feel quite so left out at family functions -- we'll bring out own stuff, or make things that everyone can eat. My dad, on the other hand, is resistant to the house being totally gluten-free, so we all worry about cross-contamination. She's working on him...

Thanks again, and know that your words have helped me segue into a healthier lifestyle with a minimum of stress!

Cathy

The positive EMA is virtually 100% specific for Celiac. You also have a positive DGP, which is also very specific for Celiac. I would not bother with a biopsy if I were you (but that is just me). Because your mom is Celiac, I would consider yourself diagnosed.

Thank you, thank you, to everyone. I am grateful for everyone's input.

interesting - i had labs done by Prometheus too and mine are almost the opposite of yours. Prometheus said I probably did not have celiac disease, but i'm certain i have it.

They showed my TTG IgA of 1.3u/ml, which is in the less than 10,3u/ml reference range.

however, the exact same blood sample was also tested by PeaceHealth Labs by accident (long story) and the TTG IgA came in at 29. their reference range was <20 none, 20-30 weak positive and >30eu was positive. I have the gene and my doc said with the TTG of 29, that was high enough to be sure. yours is much higher than mine.

i am still wondering if i should get the biopsy done but i've been gluten-free for 2 months and i don't know how quickly you heal.

i wish you the best figuring it all out! like you, i think my family has it on my mom's side, and i am nearly certain that my mom died from complications from it. it's better to know so we can, hopefully, avoid complications from it.

Thanks so much! I really appreciate your input. Best of health for you, too!

~Cathy

Welcome Cathy!

Your results are a bit confusing - the positive DGP is enough to know something is going on related to gluten ingestion. The positive EMA means there is damage to your small intestine. With family history and two positive antibody tests - that is celiac - in my opinion.

Your total IgA is within normal range, but interestingly in the lower end of normal which is quite similar to everyone in my family - we all test higher on IgG. You are missing the tTG-IgG. I highly suggest getting it run along with nutrient testing if you have not had it done as the malabsorption caused by celiac can be another important piece of the diagnostic puzzle.

The endo is up to you - I vote get it. The reason is this...you have no gastro symptoms - I would guess you may have some other symptoms that you never would think are caused by celiac. If your endoscopic biopsy reveals clear damage it makes it much easier to be fully compliant about removing ALL gluten - at least this was the case in the early days for me as some digestive problems resolved yet my autoimmune symtoms all got worse for a time which could have left me wondering if gluten was really the cause of my symptoms - for me the endo was far worse than my bloodwork. We are all different so read as much as you can and then decide if endoscopy is the next best step for you.

Hang in there

Thanks so much, Lisa. I will have my family doctor refer me to a specialist, and we'll proceed from there. I think you are spot-on with the non-digestive symptoms; my mother feels she has traced the majority of her "other" issues throughout her life (infertility/miscarriage, dental issues, osteoporosis, ad infinitum) to celiac. Worse, she suspects her own father had silent celiac, which ultimately took his life through intestinal cancer. I was 5 when he passed away. Celiac wasn't even a blip on the map in 1977, at least in our neck of the woods (suburban Midwest).

Thanks again. Glad to have found such a welcoming community!

Cathy

Hi everyone,

I am new to the forum, although I'm not completely new to Celiac/Gluten Intolerance. My mother is Celiac/DH, and was diagnosed about 4 years ago. She has been pushing for all of her children to get tested (2 down, 1 to go) since she is a first-degree relative. (FWIW, Mum is 70, I am 40, female, married).

I had my blood work done a few weeks ago, and I received the results. My family practitioner ordered the tests, even though I am not currently exhibiting any debilitating or outward symptoms -- as far as I can tell. The labs were done through Prometheus, and my printout has the following information:

DGP IgG = Positive (5.9 EU/ml, reference <4.9)

DGP IgA = Negative (4.6 EU/ml, reference <6.1)

TTG IgA = Negative (6.5 U/ml, reference <10.3)

EMA IgA = Positive

Total IgA = 143 mg/dl (reference >44-441 mg/dl)

Prometheus report adds that "Results support a diagnosis of celiac disease," and "Serological markers for celiac disease detected."

My FP was honest enough to tell me he wasn't sure how to interpret the results, and that he would be happy to refer me to a specialist.

I know that a biopsy/endoscopy is generally used to confirm findings, but since I have a first-degree relative with Celiac, and my EMA is positive, do I really need the endo?

Really, I'm in denial. Big time.

Thank you in advance for any advice or support you may be able to offer.

Best,

Cathy