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How Long Before I Can Do Things Again

NathanFS

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NathanFS Newbie
NathanFS
Posted

Well I was diagnosed with gluten intolerance two weeks ago, the first week I ate as strictly gluten free as possible and I can only think of two times I made a mistake. The second week I have checked every label, gone to websites, checked the labels again. I don't know what I could possibly be doing wrong but I still am sleeping for 14 hours and when I am awake I have unbearable abdominal pain and muscle tightness. I want to be able to do things but I am so fatigued and have no energy. Is there anything I can do? How long was it before you started feeling normal again?

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Lisa Mentor
Lisa
Posted

Hi Nathan and welcome!

Everyone is different so there is no specific answer to your question. I would keep a food diary and document everything you eat, to include meds, vitamins, toilettress, lotions...in other words, anything that can get into your mouth.

Eat simply. Fish, meat, rice, potato, fresh veggies in the simplest way are your friends. When you feel comfortable, add a little at a time.

Once you get over the hump, it's a lot easier. This is a great place to learn...take a walk around.

Wolicki Enthusiast
Wolicki
Posted

Have you had all your vitamins and minerals checked? I got much better faster when I started supplements for the things I was low on. You should test A, all the B's, D, Ferritin, magnesium, calcium, zinc to make sure your levels are up.

sunnybabi1986 Contributor
sunnybabi1986
Posted

I also wanted to chime in about the vitamin/mineral deficiencies. I'm getting checked this week and I suspect I'm deficient in several, due to my extremely low energy level.

I did read that deficiency in Vitamin D can cause stomach pain and muscle weakness/aches. Iron or B deficiency can cause fatigue. Get those checked out and see if you need to be supplementing. Good luck! Let us know how it goes!

Janie

redsidekick Apprentice
redsidekick
Posted

Sadly, it is different for each person. I know I used to get depressed reading how quickly some people felt better. That was not the case for me. Maybe it was because Im older (42), I dont know. I can tell you things improved each month, when I looked at improvement like that, instead of daily, I could see the difference even though I still felt horrible. It has now been nine months since going gluten free, around the seventh things got noticeably better, and now nine months in I still have some bad feelings, but nothing like it was in March. Hope that helps to encourage you.

sadeew Newbie
sadeew
Posted

Hi Nathan~

It was 2 weeks before I noticed improvement and another week before I felt like I was really feeling better.

Be patient. It is different for everyone becasue we all have different degrees of damage. Age, diet, health, etc. all play an important role.

Drink LOTS of water to help your body and make smoothies with good nutrition in them so you are giving yoru body what it needs to heal.

Probiotics are super important, too, especially if you have gut pain. I take PB8 - 4 caps 3x's/day.

Korwyn Explorer
Korwyn
Posted
Well I was diagnosed with gluten intolerance two weeks ago, the first week I ate as strictly gluten free as possible and I can only think of two times I made a mistake. The second week I have checked every label, gone to websites, checked the labels again. I don't know what I could possibly be doing wrong but I still am sleeping for 14 hours and when I am awake I have unbearable abdominal pain and muscle tightness. I want to be able to do things but I am so fatigued and have no energy. Is there anything I can do? How long was it before you started feeling normal again?

Hi Nathan. Several people posted here but I want to re-iterate, get your vitamin levels checked! D, B, K, A, E, Iron levels, etc. It is VERY rare to find someone with Celiac who doesn't have some type of deficiency, and if you have been diagnosed as gluten-intolerant, it is possible you actually have Celiac disease. There is also some substantial research showing that non-gene mediated gluten intolerance can still lead to systemic inflammatory response and nutrient issues.

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    • Mari
      My only proof

      By Mari · Posted

      Years  ago a friend and I drove north into Canada hoping to find a ski resort open in late spring,We were in my VW and found a small ski area near a small town and started up this gravelled road up a mountain. We  got about halfway up and got stuck in the mud. We tried everything we could think of but an hour later we were still stuck. Finally a pickup came down the road, laughed at our situation, then pulled the VW free of the mud. We followed him back to the ski area where where he started up the rope ski lift and we had an enjoyable hour of skiing and gave us a shot of aquavit  before we left.It was a great rescue.  In some ways this reminds me of your situation. You are waiting for a rescue and you have chosen medical practitioners to do it now or as soon as possible. As you have found out the med. experts have not learned how to help you. You face years of continuing to feel horrible, frustrated searching for your rescuer to save you. You can break away from from this pattern of thinking and you have begun breaking  away by using some herbs and supplements from doTerra. Now you can start trying some of the suggestions thatother Celiacs have written to your original posts.  You live with other people who eat gluten foods. Cross contamination is very possible. Are you sure that their food is completely separate from their food. It  is not only the gluten grains you need to avoid (wheat, barley, rye) but possibly oats, cows milk also. Whenever you fall back into that angry and frustrated way of thinking get up and walk around for a whild. You will learn ways to break that way of thinking about your problems.  Best wishes for your future. May you enjpy a better life.  
    • marion wheaton
      Are Lindt chocolate balls gluten free?

      By marion wheaton · Posted

      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
      Are Lindt chocolate balls gluten free?

      By trents · Posted

      @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
      Are Lindt chocolate balls gluten free?

      By BlessedinBoston · Posted

      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
      My only proof

      By knitty kitty · Posted

      @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!
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