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

Impatient

knitaddict

By knitaddict
in Coping with Celiac Disease

Recommended Posts

knitaddict Apprentice
knitaddict
Posted

When I first went gluten free...about 2 weeks ago???...maybe?? I was feeling better right off the BAT. Now, I'm not feeling so great.

I'm so sorry to do this to the guys out there....but could it be my....ahem...monthly??? Does THAT cause some of you to flare up again? Or is this just my Crohn's talking back to me???

Argh...I'm so SICK of being SICK!!!!!!!!!! :angry::angry::angry:

Ok, sorry...just had to vent there for a sec. Thanks. *sheepish face*

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

Celiac.com Sponsor (A8-M):


curlyfries Contributor
curlyfries
Posted

Two weeks isn't long enough to expect to be completely symptom free. Some people take months, or even longer. It's also very likely that you've inadvertently been glutened. It takes a long time to get the hang of it. We've all made mistakes in the beginning.......and even months or years later, still occassionally miss something. Another possibility is that you have other food intolerances. Many of us can not tolerate dairy in the beginning, until the intestines heal. Others have problems with soy, also. For me, it's dairy and sugar. And one more thing. In the beginning it is best to keep to a simple diet.....plain meat, fruit and veggies. Those gluten free breads can be hard on the tender stomach for a while.

Hope some of this helps. :)

Jestgar Rising Star
Jestgar
Posted

Your visitor could be making things worse. It's big upheaval and rearrangements of hormones. Hopefully if that's the case it will stop doing it.

Sinenox Apprentice
Sinenox
Posted

It really is a rollercoaster ride. It's even harder to remember that when you feel great 3 months in and then crummy 1.5 years in, yet again. It takes time. This was the very hardest part for me - accepting that yes, it really was going to take more than 2 years for me to feel truly better. It was particularly hard because there were a lot of inexplicable ups and downs in between that nobody told me about, it wasn't an even gradient from worse to better. The trial and error with a lot of food doesn't help either. Stick with it and always investigate first, it may be a bad batch of questionable food after all. It's a good excuse to take time out for you and invest in things that bring you pleasure or solace, create rituals that will make you feel better. Having a plan for when you get glutened or feel really crappy is always preferable.

knitaddict Apprentice
knitaddict
Posted
  • Author

Thanks...I don't mean to be whining and complaining...I just think that the false hope (AND hormones!) probably got to me this week. I think that when I felt better right from the start, it lulled me into this sense of security....I was like, "YES! This is IT! I'm finally going to get BETTER!" Only to have whatever happened....be it accidental glutening, hormones, need more time...etc...whatever it was or IS....happen AGAIN. Ugh--I'm just so ready to feel better.....but I need to be counting my lucky stars that I'm not like some of the others on here. I read that with most people, it takes about 10 yrs to get diagnosed......I started feeling bad in January of this year and had a dx by this summer.....so I'm lucky and I just need to remember that.

Ugh---hormones! :angry::rolleyes:

kbtoyssni Contributor
kbtoyssni
Posted

Hang in there! A little more time is hopefully all you need. I also felt immediately better after going gluten-free, but had bad days here and there for the next few months. Your body's been through a lot with the celiac and will need some time to get back in tip-top shape.

henny Explorer
henny
Posted

hey I'm right there with ya sweetie!

I'm 3 weeks in and jumping at shadows also.

hang in there!

some of it could be crohn's related....I don't have that but I'm intimately familiar with it (husband has had it for over 20 years)

all you can do it sit tight and stick with it! everyone will always have some bad days.

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

Celiac.com Sponsor (A8-M):


heiko.d.26 Newbie
heiko.d.26
Posted

I completely understand you - being patient is a hard thing for me too!

It's like you are drowning there in the water and you see the rescue boat approaching in the distance but the damn thing is just getting closer really slowly...

Stay strong and hand in there - it will pay off for sure! :-)

Treen Bean Apprentice
Treen Bean
Posted

It took me 1 year before I could handle any dairy, and two years before I was able to gain back the weight I lost. I completely understand the "sick of being sick" feeling. It will go away. I promise.

knitaddict Apprentice
knitaddict
Posted
  • Author

Thanks guys...an update...I've backed off a GOOD BIT on the milk...no more cereal for now...I just use milk IN things...and it seems to be helping.

As a sidenote...I would like to share with you the dangers of buying cheap toasters. :rolleyes: So I went to Dollar General and bought a $5 toaster for my Kinninnick bread...(to which I've quickly become ADDICTED)...I popped my toast in this morning and went to go get my daughter out of bed. When we got back into the kitchen, it was FULL OF SMOKE and that smoke was POURING out of the crappy cheap toaster. <_<

Needless to say, it ruined my obscenely expensive Kinninnick toast. :angry:

Lesson learned: Do NOT put obscenely expensive toast into a horridly CHEAP toaster....you will NOT like the outcome.

The DOG wouldn't even eat the toast. :angry::lol:

ravenwoodglass Mentor
ravenwoodglass
Posted
Thanks guys...an update...I've backed off a GOOD BIT on the milk...no more cereal for now...I just use milk IN things...and it seems to be helping.

As a sidenote...I would like to share with you the dangers of buying cheap toasters. :rolleyes: So I went to Dollar General and bought a $5 toaster for my Kinninnick bread...(to which I've quickly become ADDICTED)...I popped my toast in this morning and went to go get my daughter out of bed. When we got back into the kitchen, it was FULL OF SMOKE and that smoke was POURING out of the crappy cheap toaster. <_<

Needless to say, it ruined my obscenely expensive Kinninnick toast. :angry:

Lesson learned: Do NOT put obscenely expensive toast into a horridly CHEAP toaster....you will NOT like the outcome.

The DOG wouldn't even eat the toast. :angry::lol:

That's the worst, having toast ruined that cost almost as much as the toaster! I love that bread too, and the pizza shells are great, once you can get past the cost.

Have you tried any of the nondairy milks? Rice milk is good (Pacific is safe but not Rice Dream) and the vanilla flavors are great for baking, chocolate almond milk is really nice also. It got to pricey for me though as it was so good I would go through a little four pack in a day. I now just use gluten-free chocolate syrup in rice milk, much less expensive. Also real butter is low in casien and in lactose and makes a good choice if soy is an issue as there are pitifully few butter subs without some form of either soy or casien.

Cutting dairy can really speed up the healing and many are able to add it back in after a while.

climbmtwhitney Apprentice
climbmtwhitney
Posted

knitaddict Apprentice
knitaddict
Posted
  • Author
Needless to say, it ruined my obscenely expensive Kinninnick toast. :angry:

Lesson learned: Do NOT put obscenely expensive toast into a horridly CHEAP toaster....you will NOT like the outcome.

The DOG wouldn't even eat the toast. :angry::lol:

You crack me up!

Just sharing.....When my daughter and I went gluten free 2 1/2 months ago we felt SUPER for a week or so. 5 days for my DD and 9 for me. Then, we felt just horrible. I posted here too, just like you, to try and figure out what was going on. It makes it hard to stay gluten-free when you're feeling crappy anyway, huh? The members that posted back said basically the same thing as my doctor. Our immune system was going through die-off since it wasn't seeing gluten anymore. And, it just takes time to heal. Shay posted that it took her a full 6 weeks to feel better. So my DD turned the corner after a week of feeling awful. Now she feels spectacular. Maybe she'll grow! I'm still work in progress. But, I'll say this: I was better after I fully dropped the dairy about a month in. I knew it was a problem, but I find it SO much harder than losing the gluten. :angry: Also, I'm MUCH, MUCH better after I dropped the soy. Turns out that was a problem too. Who knew.

Hang in there. Definitely stick with it. I have more energy this week than last. I am getting better a little bit at a time and you will too!

Sonya

Ahaaa! I didn't know about that!!! Now things are starting to make a little sense. Oh, and I forgot...in addition to backing OFF on the milk...I also had my doc start me on a series of B12 shots...I think that first one might've kicked in yesterday......I kinda cleaned the @#$% out of my house!!! Ugh---and it NEEEEEEEDED it too! :P

Wonka Apprentice
Wonka
Posted
Thanks...I don't mean to be whining and complaining...I just think that the false hope (AND hormones!) probably got to me this week. I think that when I felt better right from the start, it lulled me into this sense of security....I was like, "YES! This is IT! I'm finally going to get BETTER!" Only to have whatever happened....be it accidental glutening, hormones, need more time...etc...whatever it was or IS....happen AGAIN. Ugh--I'm just so ready to feel better.....but I need to be counting my lucky stars that I'm not like some of the others on here. I read that with most people, it takes about 10 yrs to get diagnosed......I started feeling bad in January of this year and had a dx by this summer.....so I'm lucky and I just need to remember that.

Ugh---hormones! :angry::rolleyes:

Whine and complain all you want. This is the place for it.

It took me 32 years to get diagnosed. I've been fully gluten free since November and I'm still stuggling. I don't know what I'd do without these forums to whine about it at, lol.

I have been reacting to soooo many foods right now that I am keeping it really simple so that my gut can settle down (I discovered that I have a problem with soy, I should have realized this earlier as I have a problem with all other legumes {darn this fuzzy brain} and I'm having to slowly go off one of my meds because of it). My doctor suggested that I take L-Glutamine at night to aid in the healing and, at a Celiac Lecture yesterday, the ND also recommended it as an aid to healing.

Yesterday, while out with a fellow Celiac, I was discussing how hard this is and what kind of symptoms that I was getting. She gave me a lecture about how people don't want to hear these things, that I should only be talking to my doctor about. Needless to say things didn't go well from there. I'm soooo sensitive right now, I am having all my gut/brain/joint issues from this, I'm going through a drug withdrawl and I have zero coping abilities right now. So this incident has made me even more grateful to all of you on line who take the time to respond and try to help. Thankyou.

Jestgar Rising Star
Jestgar
Posted
Yesterday, while out with a fellow Celiac, I was discussing how hard this is and what kind of symptoms that I was getting. She gave me a lecture about how people don't want to hear these things, that I should only be talking to my doctor about.

She needs to be dope slapped.

Not only does "whining" help us clarify what things are really bothering us so we can start to address them, sharing information connects us with others that have the same issues, and maybe have found a way to fix them.

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,016
    • Most Online (within 30 mins)
      7,748
    HONEYSUCKLE
    Newest Member
    HONEYSUCKLE
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • knitty kitty
      Positive biopsy

      By knitty kitty · Posted

      In the study linked above, the little girl switched to a gluten free diet and gained enough weight that that fat pad was replenished and surgery was not needed.   Here's the full article link... Superior Mesenteric Artery Syndrome in a 6-Year-Old Girl with Final Diagnosis of Celiac Disease https://pmc.ncbi.nlm.nih.gov/articles/PMC6476019/
    • knitty kitty
      Fruits & Veggies

      By knitty kitty · Posted

      Hello, @Jordan Carlson, So glad you're feeling better.   Tecta is a proton pump inhibitor.  PPI's also interfere with the production of the intrinsic factor needed to absorb Vitamin B12.  Increasing the amount of B12 you supplement has helped overcome the lack of intrinsic factor needed to absorb B12. Proton pump inhibitors also reduce the production of digestive juices (stomach acids).  This results in foods not being digested thoroughly.  If foods are not digested sufficiently, the vitamins and other nutrients aren't released from the food, and the body cannot absorb them.  This sets up a vicious cycle. Acid reflux and Gerd are actually symptoms of producing too little stomach acid.  Insufficient stomach acid production is seen with Thiamine and Niacin deficiencies.  PPI's like Tecta also block the transporters that pull Thiamine into cells, preventing absorption of thiamine.  Other symptoms of Thiamine deficiency are difficulty swallowing, gagging, problems with food texture, dysphagia. Other symptoms of Thiamine deficiency are symptoms of ADHD and anxiety.  Vyvanse also blocks thiamine transporters contributing further to Thiamine deficiency.  Pristiq has been shown to work better if thiamine is supplemented at the same time because thiamine is needed to make serotonin.  Doctors don't recognize anxiety and depression and adult onset ADHD as early symptoms of Thiamine deficiency. Stomach acid is needed to digest Vitamin C (ascorbic acid) in fruits and vegetables.  Ascorbic acid left undigested can cause intestinal upsets, anxiety, and heart palpitations.   Yes, a child can be born with nutritional deficiencies if the parents were deficient.  Parents who are thiamine deficient have offspring with fewer thiamine transporters on cell surfaces, making thiamine deficiency easier to develop in the children.  A person can struggle along for years with subclinical vitamin deficiencies.  Been here, done this.  Please consider supplementing with Thiamine in the form TTFD (tetrahydrofurfuryl disulfide) which helps immensely with dysphagia and neurological symptoms like anxiety, depression, and ADHD symptoms.  Benfotiamine helps with improving intestinal health.  A B Complex and NeuroMag (a magnesium supplement), and Vitamin D are needed also.
    • knitty kitty
      Positive biopsy

      By knitty kitty · Posted

      @pothosqueen, Welcome to the tribe! You'll want to get checked for nutritional deficiencies and start on supplementation of B vitamins, especially Thiamine Vitamin B 1.   There's some scientific evidence that the fat pad that buffers the aorta which disappears in SMA is caused by deficiency in Thiamine.   In Thiamine deficiency, the body burns its stored fat as a source of fuel.  That fat pad between the aorta and digestive system gets used as fuel, too. Ask for an Erythrocyte Transketolace Activity test to look for thiamine deficiency.  Correction of thiamine deficiency can help restore that fat pad.   Best wishes for your recovery!   Interesting Reading: Superior Mesenteric Artery Syndrome in a 6-Year-Old Girl with Final Diagnosis of Celiac Disease https://pubmed.ncbi.nlm.nih.gov/31089433/#:~:text=Affiliations,tissue and results in SMAS.  
    • trents
      Positive biopsy

      By trents · Posted

      Wow! You're pretty young to have a diagnosis of SMA syndrome. But youth also has its advantages when it comes to healing, without a doubt. You might be surprised to find out how your health improves and how much better you feel once you eliminate gluten from your diet. Celiac disease is an autoimmune disorder that, when gluten is consumed, triggers an attack on the villous lining of the small bowel. This is the section of the intestines where all our nutrition is absorbed. It is made up of billions of tiny finger-like projections that create a tremendous surface area for absorbing nutrients. For the person with celiac disease, unchecked gluten consumption generates inflammation that wears down these fingers and, over time, greatly reduces the nutrient absorbing efficiency of the small bowel lining. This can generate a whole host of other nutrient deficiency related medical problems. We also now know that the autoimmune reaction to gluten is not necessarily limited to the lining of the small bowel such that celiac disease can damage other body systems and organs such as the liver and the joints and cause neurological problems.  It can take around two years for the villous lining to completely heal but most people start feeling better well before then. It's also important to realize that celiac disease can cause intolerance to some other foods whose protein structures are similar to gluten. Chief among them are dairy and oats but also eggs, corn and soy. Just keep that in mind.
    • pothosqueen
      Positive biopsy

      By pothosqueen · Posted

      26F!
×
×
  • 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.