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

People Who Were Diagnosed And Feel Much Better


somersat

Recommended Posts

somersat Newbie

And think clearly and are not hungry all the time?

Thanks!


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



Celiac.com Sponsor (A8-M):



ravenwoodglass Mentor

Yes but it did take awhile. It was about 6 months before I noticed a real difference with energy but the stomach pain and constant D ended before that happened. My tummy issues resolved within a month, with some slip ups of course gluten wise. Even after 8 years I sometimes still get glutened but now it is only about once or twice a year.

I was sleeping better almost immediately, but I had been up every night in the bathroom in agony for 5 years before that.

My thinking got clearer within a couple months. I think sublingual B12 helped a lot with that and it also seemed to help my ataxia resolve.

I hope this is helpful. We don't get celiac symptoms overnight, it is usually a process that leaves us ill for months or years before we finally are diagnosed. We don't heal overnight either. It takes some time. How much time varies with the individual, the systems under attack by the antibodies and how gluten free the person is.

freeatlast Collaborator

And think clearly and are not hungry all the time?

Thanks!

Yes, that has been my experience. I'm still ADD, but now I have "episodes" not constant forgetfulness. When I started back eating wheat/gluten for three years between August 2005-August 2008, I WAS hungry all the time, gained 20 pounds, and had gas when I least expected it and couldn't control it sometimes. THAT was embarrassing.

Now, I can go back to skipping meals and not having to have snacks between all the time and do just fine :) After I went back on gluten free in August 2008, it took longer to get better than the first time when I was younger and didn't lose weight this time either. Then, last year I went on The Zone diet, stayed gluten free, and I lost weight and it got my system back in synch.

chasbari Apprentice

Things certainly aren't perfect yet but instead of dreading going to sleep....if I could, I now sleep easily. I used to feel like I could never have enough padding on the mattress to keep me from major discomfort (in fact it felt like my body really wanted to be six feet under.) We took the mattress cushion off as I have no pressure points like I used to. The hunger has calmed down considerably although it took time and a real sense of withdrawal for months to get to the point where it became manageable. A side benefit is that my rheumatoid arthritis eased considerably as well.. to the point where I can not only walk, I can now run and sprint. My hearing and vision problems settled down and even though I lost most of my body fat and have a hard time maintaining weight I never get cold anymore. Used to be I could never stay warm. There are still rough patches but nothing like my average day used to be.. just a gentle reminder to be grateful for the good days!

CS

tarnalberry Community Regular
People Who Were Diagnosed And Feel Much Better Do you sleep well, not obsess about food, and have lots of energy? And think clearly and are not hungry all the time?

Sleep well? Eh... I have restless leg, apparently independent of but worsened by low iron stores. Even when the iron is back up, there's still come RLS. It's better on meds, but I'm off meds due to pregnancy. With the meds, I'd say I sleep pretty darn well. Without them, I'd say I sleep well enough. (With the pregnancy in 3rd trimester... HAHAHAHA! I'm lucky if I get to sleep for seven hours in a night and only wake up sore and needing to pee three times a night. So, no, not well. :P )

Obsess about food? No, but I don't think I ever did. Well, I have been a fairly careful planner for a while - between wanting to lose weight many years ago (and needing to be very cognizant of my diet) and having reactive hypoglycemia. But I plan as best is possible, change plans if needed, and don't really obsess. Can you be more specific over how you obsess over food?

Have lots of energy? Eh, I have fibromyalgia separate from celiac (developed years after going Gluten-free Casein-free) so I'd never say I have lots of energy. (And again, with the pregnancy, I'm pretty much tired or exhausted most of the time. :P Can't really remember having a full bucket of energy for a whole day in ages. :D ) But different people have different natural levels of energy, regardless of how much they WANT to be able to do. I have a friend who is fairly go-go-go and always has something happening. Maybe she is often tired, but it certainly never seems that way. I know that I would never have been able to keep up with her. And I know people have commented that it seemed like I did an awful lot in the past, always on the go, but given the sorts of things I was doing, it wasn't all that energy draining for me. I also have had low testosterone levels for years - before the celiac diagnosis - and getting THAT treated definitely helped a lot as well. (No, my thyroid levels have never come back low, and they don't come back borderline low either. We keep an eye on them, but they continue to be fine as best we can tell.)

Think clearly? (Again, this is funny while pregnant, which essentially causes you to be drugged with endorphins at much higher blood levels than normal. :) Clear minded is NOT how I'd describe myself at the moment. :D ) I think that improving my sleep had FAR FAR FAR FAR FAR more to do with "thinking clearly" than the change in diet. I can't emphasize enough how enough GOOD QUALITY sleep makes a difference. You can get plenty of crappy sleep and still feel like a zombie (which I have had, thanks to the RLS).

Not hungry all the time? I find that hormone variations through my cycle affected my hunger levels more than being gluten free or not. And stress levels from general life. What makes the most difference to me to not be HUNGRY all the time is to eat properly balanced (in fat/carbs/protein) meals, to steady blood sugar levels.

A lot of people have had the changes you're looking for, but I think it's easy to think that the gluten-free diet will clear up everything, when a lot of these things are relative and have other causes that are common in our lives.

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - marion wheaton replied to marion wheaton's topic in Gluten-Free Foods, Products, Shopping & Medications
      3

      Are Lindt chocolate balls gluten free?

    2. - trents replied to marion wheaton's topic in Gluten-Free Foods, Products, Shopping & Medications
      3

      Are Lindt chocolate balls gluten free?

    3. - BlessedinBoston replied to marion wheaton's topic in Gluten-Free Foods, Products, Shopping & Medications
      3

      Are Lindt chocolate balls gluten free?

    4. - knitty kitty replied to Jmartes71's topic in Related Issues & Disorders
      14

      My only proof


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,412
    • Most Online (within 30 mins)
      7,748

    Susan Marble
    Newest Member
    Susan Marble
    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

    • marion wheaton
      Thanks for responding. I researched further and Lindt Lindor chocolate balls do contain barely malt powder which contains gluten. I was surprised at all of the conflicting information I found when I checked online.
    • trents
      @BlessedinBoston, it is possible that in Canada the product in question is formulated differently than in the USA or at least processed in in a facility that precludes cross contamination. I assume from your user name that you are in the USA. And it is also possible that the product meets the FDA requirement of not more than 20ppm of gluten but you are a super sensitive celiac for whom that standard is insufficient. 
    • BlessedinBoston
      No,Lindt is not gluten free no matter what they say on their website. I found out the hard way when I was newly diagnosed in 2000. At that time the Lindt truffles were just becoming popular and were only sold in small specialty shops at the mall. You couldn't buy them in any stores like today and I was obsessed with them 😁. Took me a while to get around to checking them and was heartbroken when I saw they were absolutely not gluten free 😔. Felt the same when I realized Twizzlers weren't either. Took me a while to get my diet on order after being diagnosed. I was diagnosed with small bowel non Hodgkins lymphoma at the same time. So it was a very stressful time to say the least. Hope this helps 😁.
    • knitty kitty
      @Jmartes71, I understand your frustration and anger.  I've been in a similar situation where no doctor took me seriously, accused me of making things up, and eventually sent me home to suffer alone.   My doctors did not recognize nutritional deficiencies.  Doctors are trained in medical learning institutions that are funded by pharmaceutical companies.  They are taught which medications cover up which symptoms.  Doctors are required to take twenty  hours of nutritional education in seven years of medical training.  (They can earn nine hours in Nutrition by taking a three day weekend seminar.)  They are taught nutritional deficiencies are passe' and don't happen in our well fed Western society any more.  In Celiac Disease, the autoimmune response and inflammation affects the absorption of ALL the essential vitamins and minerals.  Correcting nutritional deficiencies caused by malabsorption is essential!  I begged my doctor to check my Vitamin D level, which he did only after making sure my insurance would cover it.  When my Vitamin D came back extremely low, my doctor was very surprised, but refused to test for further nutritional deficiencies because he "couldn't make money prescribing vitamins.". I believe it was beyond his knowledge, so he blamed me for making stuff up, and stormed out of the exam room.  I had studied Nutrition before earning a degree in Microbiology.  I switched because I was curious what vitamins from our food were doing in our bodies.  Vitamins are substances that our bodies cannot manufacture, so we must ingest them every day.  Without them, our bodies cannot manufacture life sustaining enzymes and we sicken and die.   At home alone, I could feel myself dying.  It's an unnerving feeling, to say the least, and, so, with nothing left to lose, I relied in my education in nutrition.  My symptoms of Thiamine deficiency were the worst, so I began taking high dose Thiamine.  I had health improvement within an hour.  It was magical.  I continued taking high dose thiamine with a B Complex, magnesium. and other essential nutrients.  The health improvements continued for months.  High doses of thiamine are required to correct a thiamine deficiency because thiamine affects every cell and mitochondria in our bodies.    A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function.  The cerebellum of the brain is most affected.  The cerebellum controls things we don't have to consciously have to think about, like digestion, balance, breathing, blood pressure, heart rate, hormone regulation, and many more.  Thiamine is absorbed from the digestive tract and sent to the most important organs like the brain and the heart.  This leaves the digestive tract depleted of Thiamine and symptoms of Gastrointestinal Beriberi, a thiamine deficiency localized in the digestive system, begin to appear.  Symptoms of Gastrointestinal Beriberi include anxiety, depression, chronic fatigue, headaches, Gerd, acid reflux, gas, slow stomach emptying, gastroparesis, bloating, diarrhea and/or constipation, incontinence, abdominal pain, IBS,  SIBO, POTS, high blood pressure, heart rate changes like tachycardia, difficulty swallowing, Barrett's Esophagus, peripheral neuropathy, and more. Doctors are only taught about thiamine deficiency in alcoholism and look for the classic triad of symptoms (changes in gait, mental function, and nystagmus) but fail to realize that gastrointestinal symptoms can precede these symptoms by months.  All three classic triad of symptoms only appear in fifteen percent of patients, with most patients being diagnosed with thiamine deficiency post mortem.  I had all three but swore I didn't drink, so I was dismissed as "crazy" and sent home to die basically.   Yes, I understand how frustrating no answers from doctors can be.  I took OTC Thiamine Hydrochloride, and later thiamine in the forms TTFD (tetrahydrofurfuryl disulfide) and Benfotiamine to correct my thiamine deficiency.  I also took magnesium, needed by thiamine to make those life sustaining enzymes.  Thiamine interacts with each of the other B vitamins, so the other B vitamins must be supplemented as well.  Thiamine is safe and nontoxic even in high doses.   A doctor can administer high dose thiamine by IV along with the other B vitamins.  Again, Thiamine is safe and nontoxic even in high doses.  Thiamine should be given if only to rule Gastrointestinal Beriberi out as a cause of your symptoms.  If no improvement, no harm is done. Share the following link with your doctors.  Section Three is especially informative.  They need to be expand their knowledge about Thiamine and nutrition in Celiac Disease.  Ask for an Erythrocyte Transketolace Activity test for thiamine deficiency.  This test is more reliable than a blood test. Thiamine, gastrointestinal beriberi and acetylcholine signaling.  https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Best wishes!
    • Jmartes71
      I have been diagnosed with celiac in 1994, in remission not eating wheat and other foods not to consume  my household eats wheat.I have diagnosed sibo, hernia ibs, high blood pressure, menopause, chronic fatigue just to name a few oh yes and Barrett's esophagus which i forgot, I currently have bumps in back of my throat, one Dr stated we all have bumps in the back of our throat.Im in pain.Standford specialist really dismissed me and now im really in limbo and trying to get properly cared for.I found a new gi and new pcp but its still a mess and medical is making it look like im a disability chaser when Im actively not well I look and feel horrible and its adding anxiety and depression more so.Im angery my condition is affecting me and its being down played 
×
×
  • 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.