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Symptoms... Recovery Time?


veggiemama

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veggiemama Rookie

Hi,

I posted in the "Parents of Kids or Babies With Celiac Disease" because both myself and my daughter are celiac. We just found out last week.

I've read that people will feel better within 3-5 days of not eating gluten. I still have stomach pain and nausea -- mostly at night.

Here is a snippet from my other post..

"

All my life I have had digestive problems and I knew that eating wheat in particular really aggravated my stomach from time to time. I actually went wheat-free and sugar-free for a long time (I'm vegan) and felt better. But during the pregnancy is really when I started having problems. My midwife wanted me to eat "protein protein protein!" so I added wheat to my diet again. I ate bagels, sandwiches... not to mention other gluten containing grains.

After the birth, my stomach problems got even worse. I felt nauseated lot but I did not know why. Recently, I got food poisoning which was awful and when I started feeling better and was able to eat again, I started eating rye bread sandwiches, spelt pretzels and wheat crackers (before I knew I was celiac obviously) and I started to feel bad again. Now my stomach is so aggravated I can hardly eat without feeling nauseated and having stomach pain. Its probably been about 3-4 weeks since I've had gluten. Shouldn't I start feeling better? I've been living on potatoes. My next approach is drinking fresh raw juices because I know they heal the digestive tract.

"

I know everyone is different too. I was just hoping to maybe be able to connect with other people and find out how they felt, etc... Thanks :)


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Gwen B Rookie
Hi,

I posted in the "Parents of Kids or Babies With Celiac Disease" because both myself and my daughter are celiac. We just found out last week.

I've read that people will feel better within 3-5 days of not eating gluten. I still have stomach pain and nausea -- mostly at night.

Here is a snippet from my other post..

"

All my life I have had digestive problems and I knew that eating wheat in particular really aggravated my stomach from time to time. I actually went wheat-free and sugar-free for a long time (I'm vegan) and felt better. But during the pregnancy is really when I started having problems. My midwife wanted me to eat "protein protein protein!" so I added wheat to my diet again. I ate bagels, sandwiches... not to mention other gluten containing grains.

After the birth, my stomach problems got even worse. I felt nauseated lot but I did not know why. Recently, I got food poisoning which was awful and when I started feeling better and was able to eat again, I started eating rye bread sandwiches, spelt pretzels and wheat crackers (before I knew I was celiac obviously) and I started to feel bad again. Now my stomach is so aggravated I can hardly eat without feeling nauseated and having stomach pain. Its probably been about 3-4 weeks since I've had gluten. Shouldn't I start feeling better? I've been living on potatoes. My next approach is drinking fresh raw juices because I know they heal the digestive tract.

"

I know everyone is different too. I was just hoping to maybe be able to connect with other people and find out how they felt, etc... Thanks :)

Are you still eating dairy and soy? I got nausea and stomach pain just like I did with gluten a couple of weeks into the gluten-free diet although I had not noticed a problem before. I went lactose free but cassein also gave me a bad feeling in the gut although not as bad nausea. Soy also now has a similar effect on me, gas, nausea.

Some people on this forum have had to give up nightshades also and even grains (not sure if potatoes count as in the nightshade family). I am avoiding Tapioca in gluten-free products and just trying to eat foods that are naturally gluten-free as much as possible. Juices may be healing but you may find the high acidity just flushes the nutrients straight through you. I have not been able to eat much raw stuff, because of this but I can now (31/2 months) eat salads and a couple of pieces of fruit, oranges are better than apple for some reason. Pears are good, banana too.

Check out supplements too, are they gluten-free. I can't even take tabs that have vit E in them (from soy), same with lipsalves. You may need to cut out non-gluten-free shampoo etc.

Hope this helps. There is a lot more info in this area on this forum. Feel better soon. You have my sympathy. It is hard to know what to do when you feel sick so much of the time especially when you have a family to care for as well.

Hang in there. :) Feel better soon.

Gwen B Rookie
Are you still eating dairy and soy? I got nausea and stomach pain just like I did with gluten a couple of weeks into the gluten-free diet although I had not noticed a problem before. I went lactose free but cassein also gave me a bad feeling in the gut although not as bad nausea. Soy also now has a similar effect on me, gas, nausea.

Some people on this forum have had to give up nightshades also and even grains (not sure if potatoes count as in the nightshade family). I am avoiding Tapioca in gluten-free products and just trying to eat foods that are naturally gluten-free as much as possible. Juices may be healing but you may find the high acidity just flushes the nutrients straight through you. I have not been able to eat much raw stuff, because of this but I can now (31/2 months) eat salads and a couple of pieces of fruit, oranges are better than apple for some reason. Pears are good, banana too.

Check out supplements too, are they gluten-free. I can't even take tabs that have vit E in them (from soy), same with lipsalves. You may need to cut out non-gluten-free shampoo etc.

Hope this helps. There is a lot more info in this area on this forum. Feel better soon. You have my sympathy. It is hard to know what to do when you feel sick so much of the time especially when you have a family to care for as well.

Hang in there. :) Feel better soon.

Oops! sorry i misread your thread. I thought you said you were veggie, not vegan. But soy can make many people feel bad. Tomatoes are also difficult to digest uncooked. It is a bit of a minefield, but there is a lot of info here.

veggiemama Rookie

Thanks Gwen. Potatoes are nightshades.

I am looking into my shampoos, supplements etc... I am not eating soy, nuts or grains period.

Thanks for your support :)

gluten15 Apprentice
Thanks Gwen. Potatoes are nightshades.

I am looking into my shampoos, supplements etc... I am not eating soy, nuts or grains period.

Thanks for your support :)

As far as supps go almost all of this company's products are free of so many things we all need-Contains no yeast, sugar, salt, starch, soy, wheat, gluten, corn or milk. and the link I made to the website to get them from..I order from them all the time. Great customer service, fast cost effective shipping, and great prices.

Open Original Shared Link

veggiemama Rookie

Thanks gluten15. I've taken Now products before. I'll check out the web site.

I just found out the multi I've been taking contains gluten...

Katester Enthusiast

I can't believe you feel it too! I've had that since I went gluten free and have had no relief. It makes me feel so happy to know I'm not the only one! If you find anything that helps, please let me know!!!


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veggiemama Rookie
I can't believe you feel it too! I've had that since I went gluten free and have had no relief. It makes me feel so happy to know I'm not the only one! If you find anything that helps, please let me know!!!

I found out that my multi-vitamin contained gluten so cutting that out has helped. Other than that, I am doing things to speed the recovery of my digestive tract so that I can start digesting things properly again. Taking herbs like slippery elm, marshmallow, chamomile, and aloe all help coat the digestive tract and help it heal.

Mary Louise Newbie

Hi,

I posted in the "Parents of Kids or Babies With Celiac Disease" because both myself and my daughter are celiac. We just found out last week.

I've read that people will feel better within 3-5 days of not eating gluten. I still have stomach pain and nausea -- mostly at night.

________________

from Mary Louise:

it was close to 6 MONTHS before i felt much difference. now, 13 months post dignosis i keep feeling better and better, stamina, sleep. Irritable bowel (IBS) and diarrhea rarely a problem now, am gaining (way too much) weight.

a friend of my husband's who found out about my celiac told him it took her 2 years before she finished recovery. Of course she may experience better health as time goes on, but she said at the 2 year mark she noticed a "settling" in symptom relief and is very pleased with where she is now.

I recall reading that sometimes the gut damage is permanent and does not improve health. that's a chilling thought...

I am on this site, just joined today, because i wonder if there are researach/studies that follow people who are gluten free after a long time being celiac, for me 50 odd years and identify other things to be aware of or be careful with...

i am not vegan/veggie so my diet is less complicated - wish i could help with ideas, etc., but cannot.

thanks for sharing.

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    • 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. 
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    • 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
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    • marion wheaton
      Wondering if anyone knows whether Lindt chocolate balls are gluten free. The Lindt Canadian website says yes but the Lindt USA website says no. The information is a bit confusing.
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