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Can iGa Show Improvements but Villi Still Blunted?


vvicin02

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vvicin02 Enthusiast

Is it possibly to have improved iGa numbers after being on GFD for 6 weeks but still have blunted villi? I am asking because I had an endoscopy for my esophagus two weeks ago and the Doc said he could see issues with my small intestines and active celiac disease. I was disappointed since I was on a GFD for a month. Next week I am going in for blood work to see if my numbers improved. I was just wondering if my villi are still blunted will the antibodies still be active without Gluten present? 


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tessa25 Rising Star

It can take many months for your IGA numbers to go down. And it can take many months for your villi damage to heal. On top of that the gluten-free diet is not as easy as it initially seems. There can be hidden gluten hidden in many things.

Ennis-TX Grand Master

You villi are blunted from the disease, it can take up to 6 weeks for your body to stop attacking them and up to 6-12 months for test to read normal, it varies from person to person. BUT it can take UP to 24 months on a gluten free diet for your villi to COMPLETELY heal according to some studies. And the diet is life long or it can start all over again. 

"You should see your physician 3-6 months after your initial diagnosis and annually thereafter to identify nutritional deficiencies, address symptoms you may still be experiencing, and confirm your adherence to the gluten-free diet. Patients on a strict gluten-free diet should have a negative anti-tTg IgA test at the 6-12 month mark"

cyclinglady Grand Master

Sure.  The antibodies testing for celiac disease was developed to help in diagnosing celiac disease.  It was not intended as a follow-up test to determine dietary compliance or a measurement of healing.  However, it is the “only tool in the toolbox”, so it is being used.  

In theory, the small intestine can heal fast.  Unfortunately, most people do not master the gluten free diet for months or longer.  Each gluten exposure can set off an antibodies reaction.  How long it lasts or how much damage it can cause is unknown.  Let’s facing it, studies require money.  Celiac disease is certainly underfunded by the government and it is not a very glamorous topic (the GI tract).  Luckily, the cure is a gluten-free diet.  Other autoimmune suffers are not so fortunate.  

That said, I will share my personal experience.  My DGP antibodies were still greatly elevated when I had a repeat endoscopy that revealed healthy villi (and my GI went in pretty deep).   I kept beating myself up on my diet even though I have been gluten free for five years and my hubby has been for 17 years.  If anyone knows this diet, it would be me!  

Since you still have intestinal damage, look to your diet.  Consider avoiding processed foods and do not eat out.  

vvicin02 Enthusiast

Thank you all. I do not eat out and I prepare my own food (with the help from my wife...lol). I still feel I am doing something wrong but don't have any GI issues and I feel good. I guess my confidence is not so high because I don't feel cheated on what I eat. I do not eat processed foods and make most foods from scratch. I guess my concern is CC, spices or sauces. I guess we shall see next week after my blood work. I guess my dilemma is to figure out what I am dong wrong if my antibodies are still elevated. I would hope they would decrease even a little- just to give me some hope. Thank you again.

cyclinglady Grand Master

Please do not get discouraged if your antibodies are still elevated.  Mine were elevated for over a year (beyond the lab ranges).  That is very common.  A month in is just too soon to heal.  Your doctor should be checking at three or six months out and not four or six weeks:

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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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      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 
    • 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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