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meowmix

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meowmix Newbie

Iron: 17 mcg/dL (Low) November 11, 2016

Ferritin: 1.8 ng/mL (Low) November 11, 2016

RBC: 4.05x10^6/uL (Low) November 11, 2016

Hemoglobin: 8.5 gm/dL (Low) November 11, 2016

Vitamin D: 25.7 ng/mL (Low) February 22, 2017

ANA Profile :  February 27, 2017

FANA:  Positive

 FANA Titer: 1:640

FANA Pattern: Homogenous

Gliadin IgA: 2 units June 29, 2017

Gliadin IgG: 3 units June 29,2017

TTG Ab IgA: <1 units/mL June 29, 2017

TTG Ab IgG: <1 units/mL June 29, 2017

Immunoglobulin A:  59.1 mg/Dl (Low) July 10, 2017

Immunoglobulin M: 44.2 mg/Dl (Low) July 10,2017

Immunoglobulin G: 1010.0 mg/Dl (Normal?) July 10, 2017

Immunoglobulin E: 5 KU/L July 10,2017

My RBC and Hemoglobin have come up and are normal.  My iron levels will get high (too high) when I take 65 mg elemental iron twice a day for several weeks but my ferritin has never gotten over 42 ng/mL.  When I stop taking my iron supplement my iron and ferritin plummet in just a matter of weeks.  My hair is falling out, I get rapid heartbeat when I get too low on iron and if I get my iron too high.  My whole body hurts especially my finger joints, back , knees and really all of my joints.  Going to the bathroom at least 2 times day and sometimes up to 5 times a day.   Extreme fatigue, Brain fog, extremely emotional and irritable.  I just went gluten free July 1, 2017 and am starting to feel better.  Joints feel better, I can sleep better, my mood is better.  Celiac or maybe just gluten sensitive?  Any thoughts?  What do my labs say about me?        


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cyclinglady Grand Master
5 hours ago, meowmix said:

Iron: 17 mcg/dL (Low) November 11, 2016

Ferritin: 1.8 ng/mL (Low) November 11, 2016

RBC: 4.05x10^6/uL (Low) November 11, 2016

Hemoglobin: 8.5 gm/dL (Low) November 11, 2016

Vitamin D: 25.7 ng/mL (Low) February 22, 2017

ANA Profile :  February 27, 2017

FANA:  Positive

 FANA Titer: 1:640

FANA Pattern: Homogenous

Gliadin IgA: 2 units June 29, 2017

Gliadin IgG: 3 units June 29,2017

TTG Ab IgA: <1 units/mL June 29, 2017

TTG Ab IgG: <1 units/mL June 29, 2017

Immunoglobulin A:  59.1 mg/Dl (Low) July 10, 2017

Immunoglobulin M: 44.2 mg/Dl (Low) July 10,2017

Immunoglobulin G: 1010.0 mg/Dl (Normal?) July 10, 2017

Immunoglobulin E: 5 KU/L July 10,2017

My RBC and Hemoglobin have come up and are normal.  My iron levels will get high (too high) when I take 65 mg elemental iron twice a day for several weeks but my ferritin has never gotten over 42 ng/mL.  When I stop taking my iron supplement my iron and ferritin plummet in just a matter of weeks.  My hair is falling out, I get rapid heartbeat when I get too low on iron and if I get my iron too high.  My whole body hurts especially my finger joints, back , knees and really all of my joints.  Going to the bathroom at least 2 times day and sometimes up to 5 times a day.   Extreme fatigue, Brain fog, extremely emotional and irritable.  I just went gluten free July 1, 2017 and am starting to feel better.  Joints feel better, I can sleep better, my mood is better.  Celiac or maybe just gluten sensitive?  Any thoughts?  What do my labs say about me?        

What does your doctor say or advise?   I am glad that you are feeling better, we are not doctors and we can not diagnose you.  We can offer you supoort and we sure know a lot about the gluten free diet.   We can definitely help you with that!  

meowmix Newbie

I haven't heard back from my doctor yet.  I was just wondering if any of my these labs where common among people with celiac.  Thanks for responding!

cyclinglady Grand Master

It seems like you have a lot going on, so it would be best to talk to your doctor.  Lab ranges are missing, so I could not say if your celiac panel is positive or not.  Each lab varies.  Would hate to point you in the wrong direction.  

I can tell you that anemia  was my main symptom.  Doctors all my life blamed menstruation for my iron deficiency and I already had a genetic anemia.  So, I was dismissed.  Find out the real reason as to why you continue to be anemic.   

meowmix Newbie

Thanks for responding again.  None of the nurse practitioners or the doctor would ever really say what caused my anemia.  They all kinda thought that it was from heavy periods.  Gosh, you go in to see a doctor or nurse practitioner and they have about 10 minutes to give you before they start backing out the door.  Its kinda no wonder why no one ever gets the whole story or finds out whats really wrong (or why it takes so long to finally figure it out).  It sucks for the patient but it also sucks for the nurses and doctors because they are stretched so thin.  I know what it is like to work when there is too much to do and not enough time or people to do it.  It hurts everyone.  

Hatbox121 Apprentice

Have you not been sent to rheumatology to further investigate the positive ANA? A positive ANA alone can't diagnose anything but it does warrant further investigation and more blood work, ie lupus, RA, scleroderma, etc depending on symptomology. 

There is also an anemia of chronic disease which I think can be connected to certain connective tissue disorders.

meowmix Newbie

My RA blood test was negative and my dsDNA was negative too.  I think that the dsDNA is the lupus test.  I think.  I haven't been referred to a rheumatologist.   


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Hatbox121 Apprentice
16 hours ago, meowmix said:

My RA blood test was negative and my dsDNA was negative too.  I think that the dsDNA is the lupus test.  I think.  I haven't been referred to a rheumatologist.   

No anti-sm(lupus)? Yes, anti dsDNA is for SLE(lupus). No ENA panel,anti-RNP, anti-SS-A, anti-SS-B, anti histone, scl-70, etc? I'd ask for a referral, if you feel that there is something going on. I think that would be a logical step because of the positive ANA and lack of investigation. 1:640 is definitely positive. 

meowmix Newbie

SSB <3.3 RLU <=20 (reference range)

RNP <3.5 RLU <=20

Sm <3.3 RLU <=20

SSA Ro52 <2.3 RLU <=20

SSA Ro60 <4.9 RLU <=20

Scl 70 <1.2 RLU <=20

Jo 1 <2.2 RLU <=20

ds DNA Negative

FANA Positive

FANA Titer 1:640

FANA Pattern Homogeneous

 

 

  • 2 years later...
caulodren Newbie

ana+ positive can be positive with seasonal allergies as well, i had a similar problem

pikakegirl Enthusiast

I always have a high positive ANA. Diagnosed 13 years ago. Militant gluten free, I don't eat out at all. My thyroid causes many of the symptoms you describe if it is out of my comfort range, which is individual on a large scale of normal. The normal range is to wide and I feel that is why many are not properly diagnosed. My perfect number is 1.5 but I am best going closer to hyper than to hypo. Have you been checked for Hashimotos?

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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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