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A Biopsy


cristalbleu13

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cristalbleu13 Newbie

Hello everyone , could anyone explain to me in details what this result means : villous atrophy grade 4( i was diagnosed with the celiac disease at the age of 2 ).


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squirmingitch Veteran

It means total villous atrophy or completely flattened villi. Completely atrophic. . It is in this extremely uncommon setting that a

lymphoma is more likely to occur.

See:

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

Have you been gluten free since the age of two? Was this the results of an endoscopy at the age of 2 or was this from a recent endoscopy?

beachbirdie Contributor

Hello everyone , could anyone explain to me in details what this result means : villous atrophy grade 4( i was diagnosed with the celiac disease at the age of 2 ).

The grade 4 atrophy rating is a measurement of damage to the villi in your intestine. A rating this high is usually seen in untreated celiac.

When was this biopsy done? If recent, you have serious intestinal damage going on. And at risk for a lot of stuff.

cristalbleu13 Newbie

It means total villous atrophy or completely flattened villi. Completely atrophic. . It is in this extremely uncommon setting that a

lymphoma is more likely to occur.

See:

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

Have you been gluten free since the age of two? Was this the results of an endoscopy at the age of 2 or was this from a recent endoscopy?

This was at the age of 2 , had been on gluten free diet for 16 years ,then stopped it at the age of 18 and after 4 years of gluten started having ibs symptoms , anxiety , panic attacks and lost 11 lbs , had to come off gluten again without listening to doctors and it's been 4 week since i went on gluten free diet again.

beachbirdie Contributor

Hello everyone , could anyone explain to me in details what this result means : villous atrophy grade 4( i was diagnosed with the celiac disease at the age of 2 ).

Ahh...I just went back and found one of your original posts in which you shared your whole story.

I am dumbfounded that a doctor put you back on a "normal" diet after having been diagnosed celiac. And that they went fishing for other things when you started getting sick.

Celiac is not something you "get over", and you simply must be gluten free. The damage is causing nutritional deficiencies which will feed your panic attacks, neuropathies, and other symptoms.

They shouldn't be putting you through this all over again and I'm sorry you've been suffering for the sake of incompetent doctors. :angry:

cristalbleu13 Newbie

Ahh...I just went back and found one of your original posts in which you shared your whole story.

I am dumbfounded that a doctor put you back on a "normal" diet after having been diagnosed celiac. And that they went fishing for other things when you started getting sick.

Celiac is not something you "get over", and you simply must be gluten free. The damage is causing nutritional deficiencies which will feed your panic attacks, neuropathies, and other symptoms.

They shouldn't be putting you through this all over again and I'm sorry you've been suffering for the sake of incompetent doctors. :angry:

I got fed up of doctors , how long will it take to get rid of gluten ?? how long will it take for the symptoms to go away if they are related to my celiac disease

beachbirdie Contributor

I got fed up of doctors , how long will it take to get rid of gluten ?? how long will it take for the symptoms to go away if they are related to my celiac disease

Kind of depends on your body. Some people heal more quickly than others.

Were you feeling fairly well before you were taken on this misadventure?

It is possible it could take up to some months to heal. Because celiac is an autoimmune response to the gluten, you will have a lot of inflammation in your body. That takes time to overcome, even after the immediate symptoms have faded.

I hope you will be feeling well very soon!


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cristalbleu13 Newbie

Kind of depends on your body. Some people heal more quickly than others.

Were you feeling fairly well before you were taken on this misadventure?

It is possible it could take up to some months to heal. Because celiac is an autoimmune response to the gluten, you will have a lot of inflammation in your body. That takes time to overcome, even after the immediate symptoms have faded.

I hope you will be feeling well very soon!

To be honest with you i have lots of symptoms , stomach problems , ibs , anxiety , panic attacks but since i started the gluten free diet i managed to eat , i'm having my appetite back again , i'm not feeling that sad like i was before ( i'm not crying for no reason now i'm fine), i'm bit worried because i'm not sure if all of this is caused by my celiac disease , and i'm not sure wether it will go away or not in couple of months , the doctor i'm with at the moment doesn't care at all , she didn't even believe i had a celiac disease at the age of 2 until i had to show the medical record because the blood test was negative .

We will see how it goes in 2 to 3 months :(

squirmingitch Veteran

Your problems really ARE due to the celiac dear --- they really are. I know it seems hard to believe but believe. There are countless people who have posted on this board who can attest to the myriad of things untreated celiac causes to happen. You have had celiac disease your whole life. It will never go away but you will be fine if you stay on a strict gluten-free diet. Hang in there! You'll get better --- honest!!!!smile.gif

Ninja Contributor

Here is a link that lists everything that can be a symptom, or related disorder of Celiac: Open Original Shared Link

cristalbleu13 Newbie

Thank's everybody and i hope i'll get better soon with the gluten free diet :)

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    • 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. 
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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 
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