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Gluten detox, what to expect!

Kazbo
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Kazbo Rookie
Kazbo
Posted

Hi everyone,  I'm so new to this so be kind 😀. I have been experiencing diarrhea, bloating and a couple of other symptoms of gluten intolerance for the last 5 years. I have had a simple blood test in the past which I was told came back normal, it was the TTg ItA and my result was 0.2. The Internet tells me different things here so I've no real clue. Anyway as I am sick of experiencing these issues I decided to give gluten free a bash 5 days ago and see what happened.  Well, I have had ĺ mixed results, sometimes the diarrhea eases sometimes not, I have stomach craps and feel bloated today. Yesterday I came out in a rash which I have read sounds like dermatitis herpetiformis. I've never had this before!  Feeling miserable, worried and really confused tbh. Would this be normal if I didn't have any intolerance?  Is this what everyone went through?  Should I carry on? I have made an appointment with my GP to get some support but that's a few weeks away. Please she'd some light.  I have read quite a few threads but still my head spins. X

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trents Grand Master
trents
Posted

Welcome to the forum, @Kazbo!

Unfortunately, your original testing, with only the TTG-IGA antibody test being ordered, was less than thorough and I certainly would not rule out celiac disease (aka, "gluten intolerance") just yet. I would like to see you get a more complete celiac panel done with these tests ordered:

Total IGA

TTG-IGA

DGP-IGA

DGP-IGG

You would need to be eating generous amounts of gluten (the equivalent of 4-6 slices of bread daily) for several weeks leading up to the testing.

It is also possible that you may be suffering from NCGS (Non Celiac Gluten Sensitivity) which shares many of the same symptoms with celiac disease but does not damage the villous lining of the small bowel as does celiac disease. NCGS is 10x more common than celiac disease but there is no test for it so, celiac disease must first be ruled out. 

You might also trial eliminating dairy and oats from your diet as a significant percentage of celiacs are intolerant of these two foods as well. 

Eating truly gluten free is much more of a challenge than most people realize so I wonder if you are actually accomplishing that in your current experiment. I offer this: 

 

 

Kazbo Rookie
Kazbo
Posted
  • Author

Thank you, for that info. 🙂

I have been pretty careful and researched everything I've eaten so far but I realise there is so much to learn. 

The test was not helpful or followed up, I think I just reached breaking point so decided to do my own thing and see. I just wasn't expecting these reactions. 

I also have a thyroid condition which I am aware has links with gluten issues.  

 

knitty kitty Grand Master
knitty kitty
Posted
(edited)

@Kazbo,

Yes, you should carry on.

I agree with @trents that more complete testing should be done before going gluten free.  

Since symptoms often worsen after reintroducing gluten after being gluten free, you may want to continue with eating gluten.  You will need to be consuming gluten for an endoscopy with biopsies which is the gold standard for diagnosing Celiac Disease.

Since you've had diarrhea for so long you should be checked for nutritional deficiencies.  Celiac Disease causes malabsorption of essential nutrients.  Nutritional deficiencies can damage the body. 

Thyroid problems can be caused by malnutrition or may be caused by a second autoimmune disease,  autoimmune thyroiditis, frequently found concurrently with Celiac Disease. 

Thiamine deficiency can precipitate thyroid problems.  Niacin deficiency can precipitate Dermatitis Herpetiformis.  

Getting a definitive diagnosis now can save you from health problems in future.  

Edited by knitty kitty
Typo correction
Kazbo Rookie
Kazbo
Posted
  • Author
51 minutes ago, knitty kitty said:

@Kazbo,

Yes, you should carry on.

I agree with @trents that more complete testing should be done before going gluten free.  

Since symptoms often worsen after reintroducing gluten after being gluten free, you may want to continue with eating gluten.  You will need to be consuming gluten for an endoscopy with biopsies which is the gold standard for diagnosing Celiac Disease.

Since you've had diarrhea for so long you should be checked for nutritional deficiencies.  Celiac Disease causes malabsorption of essential nutrients.  Nutritional deficiencies can damage the body. 

Thyroid problems can be caused by malnutrition or may be caused by a second autoimmune disease,  autoimmune thyroiditis, frequently found concurrently with Celiac Disease. 

Thiamine deficiency can precipitate thyroid problems.  Niacin deficiency can precipitate Dermatitis Herpetiformis.  

Getting a definitive diagnosis now can save you from health problems in future.  

Thank you for this information.  It's hard to think about going back to gluten at the moment as I've just been brave enough to take the leap. What you are saying makes sense though. Thank you 😊 

knitty kitty Grand Master
knitty kitty
Posted

I understand.  It's a bumpy ride to diagnosis.  What other diseases are diagnosed by harming oneself?  What happened to "First do no harm" -- the Hippocratic oath?  

Genetic testing and improvement on a gluten free diet is how I was diagnosed.  I couldn't finish a gluten challenge because going back to gluten after being gluten free for quite awhile made me extremely ill.  I knew I improved on a gluten free diet, but I needed to confirm I had the Celiac genes.  If I didn't have the Celiac genes, I would have had to keep looking for the causes of my health problems.  

Take a few deep breaths.  Think about it.  We support you which ever way you decide to go.  Some need those antibody numbers and Marsh scores, some don't.  

Best wishes.

trents Grand Master
trents
Posted

Ditto. An official celiac diagnosis is not worth permanently damaging your health.

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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?

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      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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