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Tcell Lymphocyte - Biopsy Positive


artselegance

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artselegance Apprentice

I'm new to all this....so I'll make this as brief as possible.

I was diagnosed B12 Deficient in December, 2007. Treatment for this includes Weekly injections, Sublinguals daily, B-complex, folinic acid.

Have had stomach issues off and on for years and have taken stomach meds consistently for last 3-5 years. (prilosec, nexium, protonix). Last several months acid reflux, burping, indigestion, heartburn constant with everything I eat. Gastro did EGD and colonscopy on Aug 8th. Nurse called and Friday for me to come in on Monday to have blood testing done for celiac. She said the biopsy is showing positive for Celiac, but they must do further testing. She said the TCell Lymphoctye is what the biopsy shows.

Is this a sign of lymphoma. I have been reading this site all weekend about celiac and am truly overwhelmed. How long will it take blood tests to come back. I know they have to send them off. Usually if the biopsy is positive, does the bloodwork come back positive?

I'm now beginning to wonder about the cancer end of this.....my mind is running wild.

My tummy is distended, bloated, gurgling......and I guess I will just start gluten free tomorrow and see what happens.

Anyone with any insight please post.....I'm glad I found this wonderful site and look forward to making friends.


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ShayFL Enthusiast

I saw your post and had to respond. I know you are worried. So I did some research online. I found this:

Open Original Shared Link

It sounds like that once you go on a Gluten Free diet your T-Cells will go back to normal. Try not to let complicated medical terms scare you (although I know it hard). I do not think you have cancer.

And regardless of what the blood tests say....you have intestinal evidence of Celiac. You need to be on a gluten-free diet for life. Make sure they test your total IgA. If you are deficient in this antibody, the other blood tests will be invalid, so they will need to do IgG on you.

artselegance Apprentice

Thanks for you response Shay. And you are so right about the medical terms. I realize at this point I need to concentrate on the healing and eating the proper foods. These forums help so much.

I have so much to learn because the evidence IS there.

nora-n Rookie

The biopsy is the official test for celiac, was yours just showing increased intraepithelial lymphocytes, or blunted villi, or something not totally conclusive? What did it say?

I guess they want the blood tests too, maybe in order to get a baseline so they can tell later how much the antibodies have gone down on the gluten-free diet. But one does not really NEED them if the biopsy came back positive.

in old times, they just did a repeat biopsy a year later to check how much you improved.

In kids, they did a repeat biopsy, and then the chid had to go back on gluten, and then be biopsied again, and then if they did not find damage this time, the diagnosis was taken away....Nowadays they put you on a gluten-free diet for life.

nora

artselegance Apprentice
The biopsy is the official test for celiac, was yours just showing increased intraepithelial lymphocytes, or blunted villi, or something not totally conclusive? What did it say?

I guess they want the blood tests too, maybe in order to get a baseline so they can tell later how much the antibodies have gone down on the gluten-free diet. But one does not really NEED them if the biopsy came back positive.

in old times, they just did a repeat biopsy a year later to check how much you improved.

In kids, they did a repeat biopsy, and then the chid had to go back on gluten, and then be biopsied again, and then if they did not find damage this time, the diagnosis was taken away....Nowadays they put you on a gluten-free diet for life.

nora

Nora, thanks for asking and just now I have requested a copy of the biopsy. The "RUDE" nurse told me yesterday that it would take 7 to 10 days to get the blood tests back. Soon as I get the report I will post. Thanks again.

firegazing Newbie

Sorry that the nurse was rude to you about the blood tests. I've had several such experiences now. Did she mean that it would take 7-10 days for -them- to get the results, or for them to tell you the results? I've had good luck getting a copy of my blood test results sooner when I tell the office that I need a copy for something else (for example, that I missed work/class while I was at the lab and I need to prove where I was).

artselegance Apprentice
Sorry that the nurse was rude to you about the blood tests. I've had several such experiences now. Did she mean that it would take 7-10 days for -them- to get the results, or for them to tell you the results? I've had good luck getting a copy of my blood test results sooner when I tell the office that I need a copy for something else (for example, that I missed work/class while I was at the lab and I need to prove where I was).

The lab work is sent to California. So it probably does take several days... I will give it until next Monday, then place another telephone call. Thanks!


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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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