Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

The Honeymoon Is Over


ker0pi

Recommended Posts

ker0pi Rookie

I have determined the HONEYMOON is over. I am approaching 5 weeks gluten free and the first 4 were blissful. I have enjoyed watching all my crippling pain vanish and my bm's become regular for the first time in my life. I had oddles of energy and just couldn't slow myself down. Well now, I feel a bit crummy. It is no where near the crippling pain and unbearable lethargy I was feeling, not by a long stretch. But now, now I have awful painful gas, my stomach just feels soar. I wake up tired, not OH MY GOD I CAN'T FACE THE DAY tired, but tired. My tummy is not happy about some foods, all gluten-free of course. I feel a lot like I did about 7 years ago, vague symptoms of feeling not so hot most days, I would push threw and try not to let it slow me down. Well about 4 1/2 years ago I GOT slowed down by this and was certain I was dying of some obscure incurable disease, well that was sort of right, only I'm not dying and though incurable it is treatable. Will I get my zestfull honeymoon phase back? Am I having withdrawal or is this my new norm? Sort of crappy but still able to live, unlike the past 4 1/2 years. Or am I insane to think I would feel fabulous after just a month. Oh, excuse my rambling, my biggest problem, impatience. Just needed to vent a bit. Was is very up and down for you in the beginning too?


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Cait701 Newbie

I don't have much insight to offer on it if it gets better, but know that I'm feeling the EXACT same thing. I'm pretty sure my downward slump came from getting glutenated, is it possible you got hit and didn't know it?

Sorry I can't be more help about what to expect. But it helped me to see that you're feeling the same way I am. Hopefully you'll take comfort in the fact that at least one other person out there is missing the honeymoon phase, too.

ker0pi Rookie

I don't have much insight to offer on it if it gets better, but know that I'm feeling the EXACT same thing. I'm pretty sure my downward slump came from getting glutenated, is it possible you got hit and didn't know it?

Sorry I can't be more help about what to expect. But it helped me to see that you're feeling the same way I am. Hopefully you'll take comfort in the fact that at least one other person out there is missing the honeymoon phase, too.

It does help. Everything I have read on this forum that leaves me thinking, "It's not just me!" Makes me feel a little better. I keep telling myself not to mark of days but weeks and then stretch it to months. I don't think I got CC, but I plan on refraining from the wine next week at communion, I get my own special gluten-free wafers. I had a moments pause when I ate some apple slices during coffee hour, there was nothing else on the table that had been cut with a knife so I figured I was safe and we are fully gluten-free at home. The only question mark would be Saturday, my son's birthday party, my hubby made regular bread PB&J's for the kids and then I handed them out. I didn't eat anything after touching the sandwiches and washed my hands as soon as we got home. Everything else at the party was gluten-free. I will keep pondering this.

Good luck to you too, may we both find our honeymoon phase again.

IrishHeart Veteran

I don't think I got CC, but I plan on refraining from the wine next week at communion.

Think about it. If others who took in the gluteny hosts sip from the shared cup, then you do, what can happen?

Sit up front and ask the priest to let you take the communion wine FIRST or refrain from it altogether.

And secondly, c'mon now, sweets, we have discussed this, :) but I will tell you again ....healing takes time, often 6 months to 2 years.... or more.

Ditch the dairy, if you haven't already. Stay the course.

Repeat after me...."this is a long up and down road to recovery. I need not get discouraged. I am healing." ;)

hugs, IH

IrishHeart Veteran

we are fully gluten-free at home. The only question mark would be Saturday, my son's birthday party, my hubby made regular bread PB&J's for the kids and then I handed them out. I didn't eat anything after touching the sandwiches and washed my hands as soon as we got home.

He made them, you handled them and waited until you got home to wash your hands?

My guess is during that time, you probably touched your face approximately 20 times and did not even realize it.

Did your son eat those too? Did he give you hugs and kisses?

CC happens so easily.

If you are gluten-free, your home is gluten-free and everything else at the party is gluten-free, then all it takes if those gluten sandwiches to undo it all.

ker0pi Rookie

Sit up front and ask the priest to let you take the communion wine FIRST or refrain from it altogether.

I do get served first after my priest and the acolyte, my priest has been wonderful, her dear friend and fellow priest is a Celiac so she immediately spoke to her about how to handle my communion, there's a laminate step by step instruction on how to avoid cc with my wafers posted in the Sacristy. It's the ceremony part where she breaks the wafer, I'm concerned crumbs end up in the wine and I dip instead of drink to "minimize" potential exposure. I'm still going to pass next week and see if I feel better on Sundays, it's also my errand/shopping day and I do the most physically demanding things that day. I may just be wearing myself out on Sundays and feel oogggyy come Monday.

ker0pi Rookie

He made them, you handled them and waited until you got home to wash your hands?

My guess is during that time, you probably touched your face approximately 20 times and did not even realize it.

Did your son eat those too? Did he give you hugs and kisses?

CC happens so easily.

If you are gluten-free, your home is gluten-free and everything else at the party is gluten-free, then all it takes if those gluten sandwiches to undo it all.

We were at the beach so I had my hubby pour water over my hands so I could clean them as best I could. When we got home I took my son straight to the shower for de-sanding and I do not recall any hugs or kisses before the shower. My hubby gave me "a talking to" after I handed out the sandwiches. He did the first round and was busy when I got asked for seconds.

It is entirely possible that is part of why I feel crummy today.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



IrishHeart Veteran

Just trying to sort it out with you and from your replies, it would seem as if you have been exposed to several sources of CC---as we all do, in our every day lives--so, take communion and skip the wine, is all I can offer.

From all you have told me, I am guessing you are possibly OVERDOING it PHYSICALLY because you are so excited that you feel better, so my honest advice is.....slow it down. Your muscles were deeply impacted.

This did not happen overnight and it will not resolve that quickly either.

Sorry, but patience, patience, patience....make this your mantra.

GFinDC Veteran

Yep, starting out is kind of an iffy process. Things are changing in gut-land and that is touchy business. Many people report being much more sensitive to gluten after going gluten-free for a bit. Small amounts of gluten may be getting you that wouldn't have bothered you before, Gluten kisses could be a problem too.

  • 2 weeks later...
LauraB0927 Apprentice

I think I am going through the same thing right now - after 3 months of being gluten free I'm starting to not feel as great and notice I'm much more sensitive to things. My GI system was never sensitive to gluten before my diagnosis. I cant seem to put my finger on what's not making me feel right and I think I will just have to be as careful as possible and hopefully things will work themselves out. So if its any comfort to you, I think my honeymoon is over too! Best wishes to you!

RuskitD Rookie

I will share my favorite mantra, learned here....

keep a food diary. You do not have to log how much you ate. Just note everything you put in your mouth. Then log how you feel. Even the slightest 'off' symptom. I made notes all day long on how I felt.

You may be surprised to learn you have had another food intolerance develope that has nothing to do with gluten.

I kept my diary, as per suggested here. After reactions, I found it wasn't gluten at all. I developed other intolerances/sensitivities.

Then cut that food out for 2 or 3 weeks and go back and try it again. You will have your answer quickly on whether or not that food can be tolerated.

We cannot begin to understand how complex our bodies are. It seems very common that after stopping gluten, and our body adjusts to NOT being poisoned by it, and having to live in PROTECTION FROM GLUTEN mode, that our body decides there are other foods we are putting in there that it just doesn't want.

When I quit gluten, I munched popcorn and corn chips, thinking this would be simple to live without gluten. Then in less than a month, BAM! I began reacting to it.

Corn and soy make me 'feel' just like gluten, except I don't get the "D". Soy will make rumbles in the depths of my body, as well as make me feel tired and lethargic. Corn (any form of it) gives me heartburn in 1/2 hour, and then makes me feel exhausted, foggy, despondent for days.

For your health, please look deeper into what you might be reacting to, and don't just assume its gluten.

ker0pi Rookie

I will share my favorite mantra, learned here....

keep a food diary.

When I quit gluten, I munched popcorn and corn chips, thinking this would be simple to live without gluten.

For your health, please look deeper into what you might be reacting to, and don't just assume its gluten.

This theme keeps coming up for me, I kept a sleep journal during the worst parts to be more clear with my doctor about the insomnia and what specifically was causing me to wake up 5-6 times a night and which supplements/meds seemed to help. I have been thinking the same thing, no gluten, piece of cake. We already eat an organic whole foods diet and my local Co-Op is the most Gluten Free friendly place to shop with every gluten free item labeled on the shelf with a gluten free tag and every product thoroughly researched before it receives that label. And if there is a question they will research it right there at customer service and get you your answer. I have gone into this already spoiled by the ease of cutting out the gluten, I'm afraid it could be something else. That would be more difficult and involve more research and leg work on my part *sigh*. I'm not normally a lazy person but yeah, this whole label reading and watching absolutely everything you eat or touch, like the shared break room kitchen at work that causes me to nearly hyperventilate when people fix there gluten food right there is draining. I have always brought leftovers from home and simply dump my food on a plate, cover and then microwave, I don't fix anything on the counters. I did skip the wine last Sunday and have felt really good all week. But a food diary to identify other possible allergies is an excellent suggestion, now I need to make myself do it.

T.H. Community Regular

I hate to say this, but if you don't find any other answers, you may want to take a look at the gluten free communion host. I am assuming you are Catholic, yes? The gluten free host - for the Catholic Church - is around 100ppm of gluten. That would not be considered gluten free by the standards the FDA is considering, and does not meet the gluten free standards in the UK, either (which are <20 ppm).

It IS a very small amount of gluten, because it's only the small communion wafer, but that can still cause problems for some people (Biagi F, Campanella J, Martucci S, et al. A milligram of gluten a day keeps the mucosal recovery away: A case report: Nutr Rev. 2004;62(9):360-363 ).

I've heard that some folks in this situation spoke to their priest and arranged to have a separate small cup of consecrated wine put aside for them, so it wasn't contaminated by the sharing.

ker0pi Rookie

I hate to say this, but if you don't find any other answers, you may want to take a look at the gluten free communion host. I am assuming you are Catholic, yes? The gluten free host - for the Catholic Church - is around 100ppm of gluten. That would not be considered gluten free by the standards the FDA is considering, and does not meet the gluten free standards in the UK, either (which are <20 ppm).

It IS a very small amount of gluten, because it's only the small communion wafer, but that can still cause problems for some people (Biagi F, Campanella J, Martucci S, et al. A milligram of gluten a day keeps the mucosal recovery away: A case report: Nutr Rev. 2004;62(9):360-363 ).

I've heard that some folks in this situation spoke to their priest and arranged to have a separate small cup of consecrated wine put aside for them, so it wasn't contaminated by the sharing.

Thank you for the tips. I'm Episcopalian, not Catholic, often referred to as Catholic Lite, we do have communion every Sunday. I spoke with my priest today and the wafers she got for me were rice flour no gluten, Episcopalian's don't have that no wheat means it's not communion issue I've heard Catholics say. I skipped the wine again and we talked about it. I'm going to just keep skipping for now and in a few months we'll talk about getting my own cup as you mentioned. I'm going to check out that book you sited.

T.H. Community Regular

Thank you for the tips. I'm Episcopalian...

Oh great! That's wonderful. Yeah, Celiacs get kind of screwed in the Catholic church, IMO. About one half my extended family is Catholic, living in countries that are ALL Catholic, and some of them are Celiac as well. It's very difficult for them. So glad that your wafers are gluten-free! :-D

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,979
    • Most Online (within 30 mins)
      7,748

    volivier
    Newest Member
    volivier
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      @Riley, on this forum we sometimes get reports from people with similar experiences as you. That is, their celiac disease seems to go into remission. Typically, that doesn't last. At age 18 you are at your physical-biological peek in life where your body is stronger than it will ever be and it is able to fight well against many threats and abuses. As Wheatwacked pointed out, absence of symptoms is not always a reliable indicator that no damage is being done to the body. I was one of those "silent" celiacs with no symptoms, or at least very minor symptoms, whose body was being slowly damaged for many years before the damage became pronounced enough to warrant investigation, leading to a diagnosis. By that time I had suffered significant bone demineralization and now I suffer with back and neck problems. Please, if you choose to continue consuming gluten, which I do not recommend, at least get tested regularly so that you won't get caught in the silent celiac trap down the road like I did. You really do not outgrow celiac disease. It is baked into the genes. Once the genes get triggered, as far as we know, they are turned on for good. Social rejection is something most celiacs struggle with. Being compliant with the gluten free diet places restrictions on what we can eat and where we can eat. Our friends usually try to work with us at first but then it gets to be a drag and we begin to get left out. We often lose some friends in the process but we also find out who really are our true friends. I think the hardest hits come at those times when friends spontaneously say, "Hey, let's go get some burgers and fries" and you know you can't safely do that. One way to cope in these situations is to have some ready made gluten-free meals packed in the fridge that you can take with you on the spot and still join them but eat safely. Most "real" friends will get used to this and so will you. Perhaps this little video will be helpful to you.  
    • Wheatwacked
      @Riley., Welcome to the forum.   It was once believed that Celiac Disease was only a childhood disease and it can be outgrown.  That was before 1951, before gluten was discovered to be cause of Celiac Disease, also called Infantilism.  Back then Cileac Disease was thought to be only a gastro intestinal disease, once you  "outgrew" the colicky phase, you were cured. You were so lucky to be diagnosed at 5 years old so your developing years were normal.  Gluten can affect multiple systems.  The nervous system, your intellegence. The muscules, skeleton. It can cause neurological issues like brain fog, anxiety, and peripheral neuropathy.  It can cause joint pain, muscle weakness, and skin rashes. Epilepsy is 1.8 times more prevalent in patients with celiac disease, compared to the general population. Because through malabsorption and food avoidances, it causes vitamin D and numerouus other essential nutrient deficiencies, it allows allergies, infections, poor growth, stuffy sinuses and eustacian tubes. There is even a catagory of celiac disease called "Silent Celiac".  Any symptoms are explained away as this, that or the other thing. Gluten is one of the most addictive substances we consume.  Activating the Opiod receptors in our cells, it can numb us to the damage that it, and other foods are causing.  It has become socially acceptable to eat foods that make us feel sick.  "There's a pill for that".   It is generally accepted that n fact you are weird if you don't. The hardest part is that if you don't eat gluten you will feel great and think why not.  But slowly it will effect you, you'll be diagnosed with real diseases that you don't have. You'll be more susseptable to other autoimmune diseases.  As you read through the posts here, notice how many are finally dianosed, after years of suffering at older ages.  Is it worth it? I think not. Perhaps this book will help:  Here is a list of possible symptoms:   
    • Riley.
      Hi! Im Riley, 18 years old and have been diagnosed for 13 years.. the testing started bc I stopped growing and didn’t gain any weight and was really small and thin for my age.  I got diagnosed when I was 5 and have been living gluten free since, in elementary and middle school it was hard for me and I kept contaminating myself bc I wanted to fit in with my friends so so badly. I ate gluten secretly at school and mostly regretted it 30 minutes later.  I’ve had symptoms like diarrhea, nausea, headaches, stomachaches, threw up a lot and was really emotional.  In 2022 I really started working on myself and tried to stay gluten free and if I did eat gluten I wouldn’t tell anyone and suffer in silence.  Last year in July I begged my mom to let me „cheat“ one day bc I just wanted to fit in… I ate a lot of different stuff, all the stuff I missed out on in my childhood like nuggets, pizza and all that.. I didn’t have symptoms that day and was doing really fine My mom and I wanted to test how far we can go and said we would test it for 12 weeks to get my blood taken after to see if I’m doing good or if symptoms start showing  As a now 18 year old girl who finally gained a normal weight and doesn’t get symptoms I’m to scared to get tested/my blood taken cuz I finally found comfort in food and it got so much easier for me and my family.  A year and 4 months later i still didn’t get any symptoms and have been eating gluten daily.  I’m scared to get tested/my blood taken cuz what if I’m actually not fine and have to go back to eating gluten free. Any tips to get over that fear and „suck it up“ cuz I know I could seriously damage my body… sorry if I seem like a idiot here… just don’t really know what to do :,)
    • Mari
      There is much helpful 'truth' posted on this forum. Truths about Celiac Disease are based on scientific research and people's experience. Celiac disease is inherited. There are 2 main Celiac 'genes' but they are variations of one gene called HLa - DQ What is inherited when a person inherits one or both of the DQ2 or the DQ8 is a predisposition to develop celiac disease after exposure to a environmental trigger. These 2 versions of the DQ gene are useful in diagnosing  celiac disease but there are about 25 other genes that are known to influence celiac disease so this food intolerance is a multigenic autoimmune disease. So with so many genes involved and each person inheriting a different array of these other genes one person's symptoms may be different than another's symptoms.  so many of these other genes.  I don't think that much research on these other genes as yet. So first I wrote something that seem to tie together celiac disease and migraines.  Then you posted that you had migraines and since you went gluten free they only come back when you are glutened. Then Scott showed an article that reported no connection between migraines and celiac disease, Then Trents wrote that it was possible that celiacs had more migraines  and some believed there was a causal effect. You are each telling the truth as you know it or experienced it.   
    • tiffanygosci
      Another annoying thing about trying to figure this Celiac life out is reading all of the labels and considering every choice. I shop at Aldi every week and have been for years. I was just officially diagnosed Celiac a couple weeks ago this October after my endoscopy. I've been encouraged by my local Aldi in that they have a lot of gluten free products and clearly labeled foods. I usually buy Milagro corn tortillas because they are cheap and are certified. However, I bought a package of Aldi's Pueblo Lindo Yellow Corn Tortillas without looking too closely (I was assuming they were fine... assuming never gets us anywhere good lol) it doesn't list any wheat products and doesn't say it was processed in a facility with wheat. It has a label that it's lactose free (hello, what?? When has dairy ever been in a tortilla?) Just, ugh. If they can add that label then why can't they just say something is gluten free or not? I did eat some of the tortillas and didn't notice any symptoms but I'm just not sure if it's safe. So I'll probably have to let my family eat them and stick with Milagro. There is way too much uncertainty with this but I guess you just have to stick with the clearly labeled products? I am still learning!
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.