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Do I Have Celiac?

JessieFree

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JessieFree Apprentice
JessieFree
Posted

hello all I am a 23 year old female. For the last for years I've had a problem with belching I saw a gastro specialist about 4 years ago who told me nothing was wrong. I just figured it was in my head. i now have a 3 year old a year after he was born I dropped a lot of wait and stopped having a period. I was trying to lose the baby weight so I figured the excessive weight loss was due to my diet and exercise. But I was still eating alot, always hungry, and still losing wait. It's been 2 and a half years and I have yet to get a period my gynecologist told me I just needed to eat more and gain weight guess he though I was anorexic. Well neway bout 4 monts ago I started having excessive gas and bloating I figured I was eating to much or something but it never went away no matter what I took and my stomach that has always been flat is sticking out all the time sometimes I look like I'm pregnant. I get muscle cramps like I used to when I was a kid and tingling in my body. My gastro specialist said my biopspsy was positive for celiac but he still wants to do a blood test and even if thats negative he still wants me to do the gluten-free diet for 3 months with a dietitian and if I don't feel better run more tests. So do I have it or not? I've only been gluten-free for a few days now I think I feel better but I've thought that b4. Does this sound like a true match? Why can't he give me a yes or no answer I'm tired of tests

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CarlaB Enthusiast
CarlaB
Posted

If you had a positive biopsy you definately have it. Go gluten-free completely and forever. Welcome!

AndreaB Contributor
AndreaB
Posted

If you have a positive biopsy you have celiac. There is no way around that one.

As far as other tests, it depends on what they are looking for. You don't need a celiac panel since the biopsy is the gold standard for diagnosis to most doctors.

Definately go gluten free and if symptoms don't improve (could be quickly or more slowly) then look into other things. It doesn't hurt to have bloodwork done for other tests, such as vitamin/mineral levels to make sure you aren't deficient in anything.

JessieFree Apprentice
JessieFree
Posted
  • Author

Thanx I don't understand why he couldn't just tell me "Yes you have it"

If you have a positive biopsy you have celiac. There is no way around that one.

As far as other tests, it depends on what they are looking for. You don't need a celiac panel since the biopsy is the gold standard for diagnosis to most doctors.

Definately go gluten free and if symptoms don't improve (could be quickly or more slowly) then look into other things. It doesn't hurt to have bloodwork done for other tests, such as vitamin/mineral levels to make sure you aren't deficient in anything.

Lisa Mentor
Lisa
Posted

Jessie:

You do have an option of going gluten free immediately. If you do not see results, then you can do further testing. Your endoscopy and biopsy were positive, that is a confirmation of celiac.

Welcome to the Club.

CarlaB Enthusiast
CarlaB
Posted
Thanx I don't understand why he couldn't just tell me "Yes you have it"

Sometimes we forget medicine is a business .... or else, maybe he wanted to be thorough, though the biopsy is the gold standard, you can't get more thorough than that.

BTW, you will learn more here than from any dietician. :)

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    • 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.
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    • BlessedinBoston
      Are Lindt chocolate balls gluten free?

      By BlessedinBoston · Posted

      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!
    • Jmartes71
      My only proof

      By Jmartes71 · Posted

      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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