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Help With Lab Results

sassyfur98

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sassyfur98 Newbie
sassyfur98
Posted

Hello everyone, I am new here and this is my first post. Please forgive me if I do this incorrectly.

I just received my lab results.

I have had 15+ years with dealing with digestive issues...ie..bm's 4-5+ times a day on some days. Terrible stomach aches since I was a small child. As an adult, those stomach aches have sent me to the hospital with swollen intestines. NEVER have I received ANY explanation other than since I don't have a gallbladder, my bile drips directly into my stomach, causing the oily, very loose stool. (however I know no one else with this issue post surgery...15 years ago) Also terrible bladder urgency, joint aches, exhaustion (all with normal thyroid levels) I finally asked my doc to do a Celiac's antibody test. I also have Graves Disease, Lupus antibodies..again, just out of range, and probably Hashi's.

My labs are as follows.

Endomysial Anntibody IgA.....Negative

t- Transglutaminase (tTG) IgA... <4 (range...0-3=neg. 4-10= weak positive..>10= positive)

Note says Tissue Transglutaminase (tTG) has been identified as the endomysial antigen. Studies have demonstrated that endomysial IgA antibodies have over 99% specificity for gluten sensitive enteropathy.

t-Transglutaminase (tTG) IgG....<6 (range....0-5= negative, 6-9=weak positive, >9= positive

Not sure if this is a celiac test or not, but I will include it just in case

Immunoglobulin A, QN, Serum...265 (70-400)

So, what do you think? No celiacs? Gluten intollerance?

Also keep in mind when I was diagnosed with Graves Disease, I was considered "borderline" yet my symptoms were severe. I don't give too much credit to those "ranges" and was wondering if the same applies here? I see my rheumatologist on Friday, and he says one must go by symptoms AND numbers. (especially with my thyroid, cause just because I am in range, doesn't mean I am ok. I seem to have a very, very small window)

Thanks for any and all replies. I would love to be more informed when I go see him. I know several studies I have read recently say that those without celiac's or gluten intollerance have NO antibodies.

Saundra

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Lisa Mentor
Lisa
Posted

Sassy, someone will be with you shortly. I'm not good at test results, but I wanted to say welcome.

ShayFL Enthusiast
ShayFL
Posted

I had doctors look me straight in the eye for 10 years and say "there is nothing wrong with your thyroid. You are fine. Your labs are perfect..........you need a psychiatrist."

OR 'You cant be hypothyroid....you are too thin." My TSH hovered around 3. The old ranges went to 5, so all of the doctors said I was fine. Imagine my horror when I learned last year that the new ranges have 3 being the highest and have been for years (Some labs are still using old ranges). I fired my doctor immediately and found a thyroid literate holistic MD. She didnt even look at my labs. Didnt need to. I was severely hypothyroid. I wasnt overweight, but that didnt concern her. She tested my reflexes and had me chart my temperature for 5 days. I had dry skin and my hair was very sparse. Eyebrows nearly absent. Muscle spasms and twitches. Depression. Fatigue. She put me on Armour. I am up to 3 grains and my hair has grown back. I have eyebrows. My skin looks 10 years younger. I have energy. My muscles dont twitch anymore. I wake up feeling refreshed.

gluten-free has stopped the weight loss, D, migraines and greatly improved my neuropathy and vertigo.

My Mom was told she was "normal" for 2 years of pure hell. Her TSH was "normal" at 4.8. No antibodies. But one day she passed out while driving and woke up with paramedics surrounding her. At the hospital a keen doctor asked her about her thyroid. He did an ultrasound and said it didnt look right. Her thyroid was nearly gone!!! Surgery revealed thyroid cancer and severe Hashimotos. She was not diagnosed with autoimmune thyroid disease by labs (they were normal), but by the fact that the disease had literally eaten away most of the organ.

Ranges dont mean anything to me anymore. What the heck is a "weak positive" anyway? Is that like being "kind of pregnant"? Ridiculous!!

If I were you, which I am not. I would ask for a biopsy for Celiac. If they refuse, then do a 3 month trial of a gluten-free diet and see if your symptoms dont improve. There is no harm in it and you have EVERYTHING to gain. If you get the biopsy, it can be another piece to the puzzle. You can try a gluten-free diet at anytime. You DO NOT need a doctor's permission.

MaryJones2 Enthusiast
MaryJones2
Posted

I'd say a weak positive is still a positive. Even if your doctor can't come up with something concrete I'd give the diet a day in court just to see how you feel. That'll be your true test.

Shay, wow, your story could be mine. I love being told I need to see a psychiatrist!

sassyfur98 Newbie
sassyfur98
Posted
  • Author
I had doctors look me straight in the eye for 10 years and say "there is nothing wrong with your thyroid. You are fine. Your labs are perfect..........you need a psychiatrist."

OR 'You cant be hypothyroid....you are too thin." My TSH hovered around 3. The old ranges went to 5, so all of the doctors said I was fine. Imagine my horror when I learned last year that the new ranges have 3 being the highest and have been for years (Some labs are still using old ranges). I fired my doctor immediately and found a thyroid literate holistic MD. She didnt even look at my labs. Didnt need to. I was severely hypothyroid. I wasnt overweight, but that didnt concern her. She tested my reflexes and had me chart my temperature for 5 days. I had dry skin and my hair was very sparse. Eyebrows nearly absent. Muscle spasms and twitches. Depression. Fatigue. She put me on Armour. I am up to 3 grains and my hair has grown back. I have eyebrows. My skin looks 10 years younger. I have energy. My muscles dont twitch anymore. I wake up feeling refreshed.

gluten-free has stopped the weight loss, D, migraines and greatly improved my neuropathy and vertigo.

My Mom was told she was "normal" for 2 years of pure hell. Her TSH was "normal" at 4.8. No antibodies. But one day she passed out while driving and woke up with paramedics surrounding her. At the hospital a keen doctor asked her about her thyroid. He did an ultrasound and said it didnt look right. Her thyroid was nearly gone!!! Surgery revealed thyroid cancer and severe Hashimotos. She was not diagnosed with autoimmune thyroid disease by labs (they were normal), but by the fact that the disease had literally eaten away most of the organ.

Ranges dont mean anything to me anymore. What the heck is a "weak positive" anyway? Is that like being "kind of pregnant"? Ridiculous!!

If I were you, which I am not. I would ask for a biopsy for Celiac. If they refuse, then do a 3 month trial of a gluten-free diet and see if your symptoms dont improve. There is no harm in it and you have EVERYTHING to gain. If you get the biopsy, it can be another piece to the puzzle. You can try a gluten-free diet at anytime. You DO NOT need a doctor's permission.

The same thing happened with me...somewhat. For YEARS...18 to be exact, doctors kept telling me my thyroid was fine. However, with each pregnancy after the first, I would loose 25-30 pounds, and never gain a pound back until AFTER the baby was born. Then I would pack on even more than I started with. At 18, I weighed 130 and I am 5 feet tall. Now at 36, I am 220 lbs. My diet hasn't changed too much.

Finally, my symptoms got so bad, the thyroid showed Graves Disease. Mind you, I never lost a pound with that disease. I personally feel I was hypo for years before the thyroid gave one last harrah and went hyper. Then there is the possibility I never had Graves, but HAshi's, as my doctor says in the beginning it can dump hormones into your system and look like hyper thyroid. Either way I had RAI 16.5 months ago.

Now this Celiac's come in to play because I started low dose naltrexone and it worked so fantastically for me for the first 3 months or so. Then suddenly, it didn't seem to work as well. The diahrrea returned, the waking a bazillion times a night returned, the bladder urgency returned (I sure miss drinking a half a cup of coffee and not peeing 5 times..lol) Someone suggested absorption issues, and I started looking at Celiacs. It sure does explain symptoms going back to childhood.

Yes, I agree those ranges are about useless. I thought my Rheumo had said ANY antibodies means Celiacs, as people without the disease NEVER have antibodies.

I'll take a "weak positive" over any kind of pregnancy...lol...5 is quite enough...hehe.

Thanks for your reply. I will see what doc says on Friday, but either way, I am about to begin my journey to gluten free. The good/bad news is my best friend was diagnosed within days of me. weird, huh?

sassyfur98 Newbie
sassyfur98
Posted
  • Author
Sassy, someone will be with you shortly. I'm not good at test results, but I wanted to say welcome.

Thank you!!

fedora Enthusiast
fedora
Posted

I agree with shay.... you can ask for a biopsy and try the gluten free diet AFTER the biopsy or try the diet. good luck

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    • Theresa2407
      Is this celiac?

      By Theresa2407 · Posted

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I use Calm because my body doesn’t absorb Magnesium and I only need to take once in evening.                                                    No dairy of any kind (milk, cheese, yogurt, No breads, No past,  No oats, No pizza, No gluten-free beer, No snacks like cake, biscuits, pies, donuts.                                                                                                Many dietitians will tell you to follow a gluten free diet but you have to heal first. Don’t misunderstand me, dietitians are our friends and help us.                                                                                              10% of people with gluten-free will be intolerant to dairy                                                                                  10% can not tolerate oats                                                                                                                     After the six weeks, you can start to add these foods back into your diet. 1 new food every 4 days; this way you know if you react to this food.                                                                                                  Oats shouldn’t be tried for 1 year after being diagnosed; then start with 1/3 of a cup. Only gluten-free Oats are acceptable.                                                                                                                                              You should have results within 3 days of following a correct healing diet. Bloating should be leaving, migraines should be gone. Might take bowels a little longer to respond. If you start with 5 times a day on the Citrucel and cut back as your bowels return to normal; then use 1 Tbsp. daily. 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I talk to many newly diagnosed people who start the gluten-free diet with pasta, breads, snacks, and pizza. After a month or so, they do not know why they don’t feel any better and still are sick with their original symptoms: They worry the diet is not working for them. For some there may be other factors involved, but most just aren’t letting their body heal properly. I blame the internet, and misinformation it contains. People want a quick fix, not realizing this is a life long disease. They need a good support group, with people who have been through this and knows what works! This is what I have found will work for you. 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Oats shouldn’t be tried for 1 year after being diagnosed; then start with 1/3 of a cup. Only gluten-free Oats are acceptable. You should have results within 3 days of following a correct healing diet. Bloating should be leaving, migraines should be gone. Might take bowels a little longer to respond. If you start with 5 times a day on the Citrucel and cut back as your bowels return to normal; then use 1 Tbsp. daily. This works if you have constipation or diarrhea. Meanwhile make sure you have had a Dexa test (bone density) and a blood test to check your vitamin and mineral levels: Zinc, D,K,B,C and iron levels. Don't take supplements while healing as your body is not accepting them and they will flush through your body. Have you had a breath test for Dairy, Fructose, and bacteria overgrowth? Should have done when first diagnosed. Remember to have a tTg IgA blood test repeated at 6 months then every year after, with another scope done in 3 years. Only way to know if you are healed. 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    • Wheatwacked
      Is this celiac?

      By Wheatwacked · Posted

      Marsh 3b is the Gold Standard of diagnosis for Celiac Disease.  Until recently, regardless of antibody tests, positive or negative, you had to have Marsh 3 damage to be awarded the diagnosis of Celiac. As I understand you,  you were having constant symptoms..  Your symptoms improved on GFD, with occassional flare ups. Did your doctor say you do and you are questioning the diagnosis? Regarding your increasing severity when you get glutened it is "normal".  Gluten acts on the Opiod receptors to numb your body.  Some report withdrawal symptoms on GFD.  I was an alcoholic for 30 years, about 1/2 pint of voda a day. Each time I identified a trigger and dealt with it, a new trigger would pop up.  Even a 30 day rehab stint, with a low fat diet (severe pancreatis) during which I rarely had cravings.  Stopped at a Wendys on the way home and the next day I was drinking again.  20 years later, sick as a dog, bedridden on Thanksgiving, after months of reasearch, I realized that gluten free was my Hail Mary.  Back in 1976 my son was diagnosed at weaning by biopsy with Celiac Disease and his doctor suggested my wife and I should also be gluten free because it is genetic.  At 25 years old I felt no gastro problems and promised if I ever did I would try gluten free.  Well, I forgot that promise until I was 63 and my wife 10 years dead.  Three days of gluten and alcohol free, I could no longer tolerate alcohol. Eleven years gluten and alcohol free, with no regrets. Improvement was quick, but always two steps forward and one back.  Over time I found nineteen symptoms that I had been living with for my entire life, that doctors had said, "We don't know why, but that is normal for some people". Celiac Disease causes multiple vitamin and mineral deficiency.  It is an autoimmune disease, meaning your immune system B and T cells create antibodies against ttg(2) in the small intestine in Celiac Disease, and sometimes ttg(3) in skin in Dermatitis Herpetiformus.  'Why' is poorly understood.  In fact, it wasn't even known that wheat, barley and rye gluten was the cause.  Celiac Disease was also called Infantilism, because it was deadly, and believed to only be a childhood disease. So, as part of your recovery you must deal with those deficiencies.  Especially vitamin D because it contols your immune system.  Virtually all newly diagnosed Celiacs have vitamin D deficiency.  There are about 30 vitamin and minerals that are absorbed in the small intestine.  With Marsh 3 damage you may be eating the amount everyone else does, but you are not absorbing them into your system, so you will display symptoms of their deficiency.   As time passes and you replenish your deficiencies you may notice other symptoms improve, some you did not even know were symptoms. Our western diet has many deficiencies built into it.   That is the reason foods with gluten are fortified.  Gluten free processed food are not required to fortify.  Vitamin D, Iodine, choline.  The B vitamins, especially Thiamine (B1) run deficient quickly.  We only store enough thiamine for 2 weeks so the symptoms of Gastrointestinal BeriBeri can come and go quickly.  Magnesium, zinc, etc. each having its own symptoms affecting multiple systems.  High homocystene, an indicator of vascular inflamation can be cause by deficient Choline, folate, B6 and or B12.  Brain fog symptoms by deficient choline, iodine, thiamine B1. Dietary intake of choline and phosphatidylcholine and risk of type 2 diabetes in men: The Kuopio Ischaemic Heart Disease Risk Factor Study  
    • Rogol72
      Help I’m cross contaminating myself,

      By Rogol72 · Posted

      I cut out the rice because it was affecting my stomach at the time ... not necessarily dermatitis herpetiformis. It was Tilda Basmati Rice, sometimes wholegrain rice. I was willing to do whatever it took to heal. Too much fiber also disagrees with me as I have UC.
    • trents
      Is this celiac?

      By trents · Posted

      But you didn't answer my question. When you consume gluten, is there an identifiable reaction within a short period of time, say a few hours?
    • Scott Adams
      Is this celiac?

      By Scott Adams · Posted

      You can still have celiac disease with negative blood test results, although it's not very common:  Clinical and genetic profile of patients with seronegative coeliac disease: the natural history and response to gluten-free diet: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5606118/  Seronegative Celiac Disease - A Challenging Case: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9441776/  Enteropathies with villous atrophy but negative coeliac serology in adults: current issues: https://pubmed.ncbi.nlm.nih.gov/34764141/   
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