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Celiac Or Not?


LoriLynn

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LoriLynn Newbie

Since 2008, I've been anemic. Just recently, I've been told it was non-iron deficient. It took many years and alot of frustration before getting that much information.I recently changed primary doctors after being "treated" for years for anemia and never getting any better. His answer was to just increase my iron intake. My new primary care physician (who I really like)ran more labs and found out I was NOT iron-deficient, told me to absolutely stop all of the iron and referred me to a rheumatologist thinking perhaps I might have some type of auto immune disease, which might explain the anemia. This specialist tested me for celiac, lupus, and Sjogren's. The Sjogren's came back as positive (mild form), negative for lupus, but positive for Celiac. my #'s are as follows:

tTG IgA (U/mL) : 4 (0-15)

Gliadin IgA (U/mL) :6 (0-15)

Gliadin IgG (U/mL) :25 (0-15)

IgA, Total (mg/dl) :146 (69-309)

The rheumatologist told me that "based on results, you need to get on a gluten free diet, or could see a gastroenterologist for biopsy to confirm the disease."

So, I just happen to work for gi doctors and had an egd done with a biopsy, which came back "normal." My gi dr has ordered a breath test to see if I have a bacterial over-growth.

I have no idea where to go from here. Since birth, I had vomitted on a daily basis until into my teens. I've been diagnosed with IBS with constipation and have daily nausea. I am still anemic and am exhausted all of the time! I just want to find out for sure what I have and how to feel better! I'm only 52 years old and feel much older much of the time.

I guess my question is, how do I know if I have celiac or not? One test says yes (the labs) and one test says no (the biopsy). I wonder if I go ahead and go on the gluten-free diet if it would help my anemia? I just don't know what to do. But I DO want to feel better. Or, is the next step a hemetologist to try to find out the cause of the anemia?

I would appreciate any input anyone might have.

Thanks in advance!!


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IrishHeart Veteran

You have a positive test, anemia, fatigue, "IBS" (which many of us were told as well--when it was celiac all along) and you have acquired yet another autoimmune disease (Sjogren's)--often associated with celiac disease. (we call IBS --I Be Stumped-- on here because it is a wastebasket syndrome. The question is WHY is your bowel irritable??)

In my opinion, you've got Celiac.

And just because your biopsy did not come back positive, it does not mean you do not have it. Could have been biopsied from the wrong place. Could be minimal damage--so far. Could be many reasons why.

You work with GI doctors and NONE of them told you any of this? :blink: They are not very good at DXing celiac, then.

Many medical journal articles discuss this very topic.

Anemia.--If it is NOT iron-deficiency, then what kind is it?

B-12? Folate?

What did he say??

Those two are most commonly associated with celiac disease. Pernicious anemia. I had both forms myself. (along with several other deficiencies)

Just dosing with iron will not correct the anemia. It WILL cause upset stomach and constipation.(two symptoms you describe)

But if your anemia is causes by malabsorption because of Celiac,

it will reverse on a gluten free diet and with PROPER supplementation.

You need a good doctor to do appropriate blood work and follow- up care and stop leaving you fatigued and in misery. You deserve better!

I speak from experience. (been there/done that) I was the same age as you when it got really, really bad and tried to kill me.

I listened to the doctors, too. They got it wrong.

If you want to go gluten-free and stop the madness, I say "Go for it"!...and welcome to the Forum! :)

We can help!!

Best wishes.

If you need any assistance, call on me. I was in your shoes.

mushroom Proficient

I second what IrishHeart said. I had pernicious anemia from low B12 and folate. I also had low Vit.D, and was hypothyroid. I had to tell my doctor to test me for all these things from what I learned right here on celiac.com. I was over 60 when I self-diagnosed celiac because no one even thought to test me for that either - I was another IBS diagnosis. It's funny, that's how so many of us end up here.

You have one positive ceiac test and all you need is one, not the whole lot. There is significant error rate in both the blood and biopsy testing, and you have all the symptoms of gluten intolerance, so if I were you I would strictly avoid it and expect to feel considerable improvement in a month or so (it may not be instantaneous). I would also ask your doctor to check your nutrient levels, and that includes potassium, magnesium, and calcium, as well as D, B12 and folate, and thyroid if it hasn't been done already. These are all things that can be affected by gluten intolerance/celiac.

Best wishes on a gluten free, healthy life. :)

BeckyGoNecky Newbie

Hi, I know that it has been awhile since your post but I thought I would still give my input. I was diagnosed with celiac disease three years ago. When they did the blood test it said I DID NOT have celiac disease. But when They did the biopsy, the vili were all down and I was diagnosed with Celiac disease. In December I collapsed in pain on my front porch and was rushed to the hospital. They ran test after test and the only thing they could find was that my vili were down and there was was major scalloping and scarring. The odd thing is that Im very strict with the gluten free diet and If I accidently eat gluten I am taken down for 4 days so I am very very careful. The hospital sent me to a major hospital where they know about celiac disease. They said at this hospital that a lot of people are MISDIAGNOSED and really do have celiac disease, but the endoscopy only goes to the TOP of the small intestine and their damaged areas are lower than the top. They performed a double balloon endoscopy on me and diagnosed me with refractory Celiac Disease. This is where they can biopsy the whole entire small intestine. I have also been anemic since I was 8 years old, and now im 22 and nothing has helped. for the past 3 years I have even taken specific gluten free iron supplements and I am still very anemic. I just found this out, but the doctors are sending me once a month to get my iron through an IV. It is the only way I can absorb any type of nutrients. I hope this helps. Good luck!!

LoriLynn Newbie

You have a positive test, anemia, fatigue, "IBS" (which many of us were told as well--when it was celiac all along) and you have acquired yet another autoimmune disease (Sjogren's)--often associated with celiac disease. (we call IBS --I Be Stumped-- on here because it is a wastebasket syndrome. The question is WHY is your bowel irritable??)

In my opinion, you've got Celiac.

And just because your biopsy did not come back positive, it does not mean you do not have it. Could have been biopsied from the wrong place. Could be minimal damage--so far. Could be many reasons why.

You work with GI doctors and NONE of them told you any of this? :blink: They are not very good at DXing celiac, then.

Many medical journal articles discuss this very topic.

Anemia.--If it is NOT iron-deficiency, then what kind is it?

B-12? Folate?

What did he say??

Those two are most commonly associated with celiac disease. Pernicious anemia. I had both forms myself. (along with several other deficiencies)

Just dosing with iron will not correct the anemia. It WILL cause upset stomach and constipation.(two symptoms you describe)

But if your anemia is causes by malabsorption because of Celiac,

it will reverse on a gluten free diet and with PROPER supplementation.

You need a good doctor to do appropriate blood work and follow- up care and stop leaving you fatigued and in misery. You deserve better!

I speak from experience. (been there/done that) I was the same age as you when it got really, really bad and tried to kill me.

I listened to the doctors, too. They got it wrong.

If you want to go gluten-free and stop the madness, I say "Go for it"!...and welcome to the Forum! :)

We can help!!

Best wishes.

If you need any assistance, call on me. I was in your shoes.

Thank you so much for the input.As far as the anemia, I've not been told what kind it is or the cause for it. My Vit B12 was 653.9 (range of 200-1100). Ferritin level was 2735.6 (range of 2-128). My primary care doctor about had a stroke with that level!:) I can't locate a folate. Is there any other name for that one that I may be over looking?

So, I have decided to follow my instincts and go on a gluten free diet. I'm thinking...what could it hurt? And, it just may help! I love the doctors I work for and I am very surprised my doctor didn't mention the possibility of having Celiac even though the biopsy came back as normal. I felt uncomfortable going to any of the other doctors I work for because I didn't want to create an uncomfortable situation for any of us. I'm afraid to wait until things get worse and a biopsy does come back as positive, when I can try to do something about it now. If it is celiac, things should get better and if it isn't, it can't hurt to try the diet, right? Anyway, I'll keep posting and am so happy and thankful to find such a site as this. Thanks again!

IrishHeart Veteran

Thank you so much for the input.As far as the anemia, I've not been told what kind it is or the cause for it. My Vit B12 was 653.9 (range of 200-1100). Ferritin level was 2735.6 (range of 2-128). My primary care doctor about had a stroke with that level!:) I can't locate a folate. Is there any other name for that one that I may be over looking?

So, I have decided to follow my instincts and go on a gluten free diet. I'm thinking...what could it hurt? And, it just may help! I love the doctors I work for and I am very surprised my doctor didn't mention the possibility of having Celiac even though the biopsy came back as normal. I felt uncomfortable going to any of the other doctors I work for because I didn't want to create an uncomfortable situation for any of us. I'm afraid to wait until things get worse and a biopsy does come back as positive, when I can try to do something about it now. If it is celiac, things should get better and if it isn't, it can't hurt to try the diet, right? Anyway, I'll keep posting and am so happy and thankful to find such a site as this. Thanks again!

No, it would say FOLATE on the lab report if that level had been checked.

Your ferritin level is very high. That is caused by a few things, including some hereditary forms of anemia and hemochromatosis. Does your doctor say what caused that? Maybe you have overloaded on iron supplementation?

Has he sent you to a hematologist?? Chronic anemia is nothing to mess with and obviously, supplementation is not really solving your problem.

This is something I would have checked out if I were you. Not trying to scare you; I just am concerned for you with a ferritin storage level that high. ( My Dad had issues like this. )

In answer to your questions, a gluten free diet is healthy :) and if you have celiac (and it seems perhaps you do!) ESSENTIAL.

If you need help getting started, I can help. Say the word and I can send you a get-started menu, some helpful books you may wish to read, info about celiac, hidden gluten sources, shopping list, etc. I made it up for my family, but none of them have taken me up on it and so, I offer it to "newbies" :)

LoriLynn Newbie

I second what IrishHeart said. I had pernicious anemia from low B12 and folate. I also had low Vit.D, and was hypothyroid. I had to tell my doctor to test me for all these things from what I learned right here on celiac.com. I was over 60 when I self-diagnosed celiac because no one even thought to test me for that either - I was another IBS diagnosis. It's funny, that's how so many of us end up here.

You have one positive ceiac test and all you need is one, not the whole lot. There is significant error rate in both the blood and biopsy testing, and you have all the symptoms of gluten intolerance, so if I were you I would strictly avoid it and expect to feel considerable improvement in a month or so (it may not be instantaneous). I would also ask your doctor to check your nutrient levels, and that includes potassium, magnesium, and calcium, as well as D, B12 and folate, and thyroid if it hasn't been done already. These are all things that can be affected by gluten intolerance/celiac.

Best wishes on a gluten free, healthy life. :)

Thank you, also, for your input. I don't believe I've had any testing in regard to my nutrient levels. I will definately ask my primary care to check those. I have a complete physical scheduled with my primary doctor in March and I know she'll run a battery of labs. In the meantime, I'm going to do the gluten-free diet and see how things work out. I'm very optimistic that I'm doing the right thing. Thanks again!


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LoriLynn Newbie

No, it would say FOLATE on the lab report if that level had been checked.

Your ferritin level is very high. That is caused by a few things, including some hereditary forms of anemia and hemochromatosis. Does your doctor say what caused that? Maybe you have overloaded on iron supplementation?

Has he sent you to a hematologist?? Chronic anemia is nothing to mess with and obviously, supplementation is not really solving your problem.

This is something I would have checked out if I were you. Not trying to scare you; I just am concerned for you with a ferritin storage level that high. ( My Dad had issues like this. )

In answer to your questions, a gluten free diet is healthy :) and if you have celiac (and it seems perhaps you do!) ESSENTIAL.

If you need help getting started, I can help. Say the word and I can send you a get-started menu, some helpful books you may wish to read, info about celiac, hidden gluten sources, shopping list, etc. I made it up for my family, but none of them have taken me up on it and so, I offer it to "newbies" :)

Irish Heart,

I have not been told anything about why my ferritin level is so high. The 1st primary care physician didn't even run this test for the 4 years I've been anemic. His only answer was to add more iron supplements for my anemia. I got so discouraged and worried that I decided I wasn't ever going back to him. That's when I changed pcp's and she is the one who ran the Ferritin test (among other labs) and told me to STOP all the iron and she referred me to the rheumatologist. But, no one seems to know the cause of the anemia. I do not have blood in my stool and no rectal bleeding. I had a colonoscopy 2 years ago and the only thing I was told was I had diverticulosis in the sigmoid colon.

I have also wondered if I should see a hematologist. Maybe I'll get more answers next month during my physical.

Thanks for all your help! I would LOVE any information you could send me on this subject. I would so appreciate it!!

LoriLynn Newbie

Hi, I know that it has been awhile since your post but I thought I would still give my input. I was diagnosed with celiac disease three years ago. When they did the blood test it said I DID NOT have celiac disease. But when They did the biopsy, the vili were all down and I was diagnosed with Celiac disease. In December I collapsed in pain on my front porch and was rushed to the hospital. They ran test after test and the only thing they could find was that my vili were down and there was was major scalloping and scarring. The odd thing is that Im very strict with the gluten free diet and If I accidently eat gluten I am taken down for 4 days so I am very very careful. The hospital sent me to a major hospital where they know about celiac disease. They said at this hospital that a lot of people are MISDIAGNOSED and really do have celiac disease, but the endoscopy only goes to the TOP of the small intestine and their damaged areas are lower than the top. They performed a double balloon endoscopy on me and diagnosed me with refractory Celiac Disease. This is where they can biopsy the whole entire small intestine. I have also been anemic since I was 8 years old, and now im 22 and nothing has helped. for the past 3 years I have even taken specific gluten free iron supplements and I am still very anemic. I just found this out, but the doctors are sending me once a month to get my iron through an IV. It is the only way I can absorb any type of nutrients. I hope this helps. Good luck!!

Becky,

Your story is exactly why I want to go ahead on the gluten free diet. I DON'T want to wait until things get so bad or painful before something gets done or a diagnosis that is satisfactory is made. Thanks for your support and help. I really appreciate it!

Good luck to you as well!:)

IrishHeart Veteran

Irish Heart,

I have not been told anything about why my ferritin level is so high. The 1st primary care physician didn't even run this test for the 4 years I've been anemic. His only answer was to add more iron supplements for my anemia. I got so discouraged and worried that I decided I wasn't ever going back to him. That's when I changed pcp's and she is the one who ran the Ferritin test (among other labs) and told me to STOP all the iron and she referred me to the rheumatologist. But, no one seems to know the cause of the anemia. I do not have blood in my stool and no rectal bleeding. I had a colonoscopy 2 years ago and the only thing I was told was I had diverticulosis in the sigmoid colon.

I have also wondered if I should see a hematologist. Maybe I'll get more answers next month during my physical.

Thanks for all your help! I would LOVE any information you could send me on this subject. I would so appreciate it!!

Okay, be sure to ask the new doctor at your physical about this ferritin issue. Bring a list of ALL your symptoms so you get all the answers you deserve.

I will post the info shortly. I have to cut and paste. It's long, so get your printer ready ! :lol:

IrishHeart Veteran

This info was compiled for my family and those with NCGI and newly Dxed Celiacs and is a starting point for information about celiac/gluten intolerance. This site is full of valuable information and people who care.

For info:

Open Original Shared Link

Open Original Shared Link

Dietary concerns –LISTS OF safe and unsafe gluten free foods:

https://www.celiac.com/articles/181/1/Safe-Gluten-Free-Food-List-Safe-Ingredients/Page1.html

https://www.celiac.com/celiac-disease/forbidden-gluten-food-list-unsafe-ingredients-r182/

Good books:

Living Gluten free for Dummies--Danna Korn

Celiac Disease: the First Year by Jules Dowler Shepard

Cecelia's marketplace Gluten-free GROCERY SHOPPING GUIDE

A quick “get-started” menu for gluten-free eating follows:

FLUIDS: Drink 1/2 your body weight daily in filtered H2O every day. A must! Celiacs are dehydrated from malabsorption. Plus, it helps cleanse toxins from body tissues and organs and keep the bowels running smoothly. Gluten is an invasive toxin.

AVOID too many sugary sodas at first--they wreak havoc on the gut.

AVOID DAIRY for 3-6 months. Lactase, which is the enzyme that breaks down the sugar lactose, is produced in the tips of the villi. When the villi get blunted in celiac disease, sometimes the ability to digest lactose is decreased and you can become “lactose intolerant.” This may cause bloating, stomach cramps, diarrhea, etc. After you go gluten-free, the villi will heal and most people are able to tolerate dairy foods again.

PROBIOTICS are a must. A good one is DF CULTURELLE. Custom Probiotics make broad- spectrum ones that worked well for me, too.

Celiacs' leaky guts have an unbalanced amount of gut flora.

Open Original Shared Link

IBS /“Irritable Bowel Syndrome” is not a diagnosis but a list of symptoms affecting the large intestine. We joke that it stands for the doctors' really thinking “I Be Stumped “.:)

All the digestive issues like acid reflux and heartburn, excess gas, camping, diarrhea and constipation will disappear or diminish on a gluten free diet.

SUGAR--too much makes me hyper, so I use stevia, honey, pure maple syrup (not most bottled pancake syrups—they contain gluten!)

Earth Balance soy-free is a good choice if you cannot have butter. You need some good essential fatty acids: Safflower oil, sunflower oil, olive oil, coconut oil.

A whole foods diet is best at first to speed healing.

Many people incorporate certified gluten-free products into their diets.

Breakfasts:

Erewhon crispy brown rice cereal or gluten-free Kellogg's RICE KRISPIES, gluten-free CHEX corn or gluten-free CHEX Rice cereal, gluten-free CHEX honey-nut or gluten-free CHEX Cinnamon

Add: rice milk, almond milk or coconut milk and add berries or sliced banana.

CERTIFIED gluten -free oatmeal w/cinnamon (glutenfreeda brand, Bob's Red Mill )

Eggs and bacon or sausage with gluten-free toast or bagel (Kinnikinnick, Udi's, Glutino Genius or homemade)

Pocono Cream of buckwheat --it's good!! (no worries--Buckwheat is not from the wheat family)

Amaranth pancakes w/pure maple syrup (bottled syrups can contain gluten)

gluten-free packaged pancake/waffle mixes (Pamela's brand is very good as is Bob's Red Mill –we use BRM on the site, for short)

Van's frozen waffles.

FRUITS and VEGGIES—eat plenty of these.

Snack ideas that are safe and handy :)

Cozy Shack Rice Pudding cups (in the dairy section)

All natural applesauce cups

gluten-free cookies or muffins (Bake them or buy them.)

Pamela's Baking Mix is versatile and good for cookies, baked goods.

Bagel with cream cheese and jam . Udi's are pretty good (frozen section)

Pamela's and King Arthur makesa very good brownie mix too!

Chobani Yogurt

Lundberg rice cakes or sliced apples and celery sticks with natural peanut butter or hummus smeared on

Glutino crackers with cheese or peanut butter

BOAR's Head brand pepperoni, salami, all their cold cuts and cheeses

Planter's peanuts, almonds, cashews.

SUNMAID raisins, prunes. Craisins by Ocean Spray. (some raisins and dried fruits are dusted with flour to keep them from sticking but these brands are safe.)

smoothies- made with coconut milk, fruit, yogurt, etc

Potato chips----like Cape Cod or Kettle Brand or Utz

Indiana Popcorn--comes in all flavors--the kettle corn is delicious

Glutino brand pretzels—they come in all flavors even chocolate -coated

Coconut milk, creamer and ice cream (Turtle Mountain So Decadent brand is very good)

Ice Cream, if dairy is not a problem for you, most Haagen Das flavors are good, for exmaple. READ LABELS!!!

Organic Corn chips w/salsa, hummus, or Guacamole

Sunflower , pumpkin or flaxseeds

Candy—Hershey's kisses or bars, regular size Reese's cups, Snickers, York peppermint patty, Butterfinger and M &Ms plain and peanut. Ghirardelli squares.

Make some Chex mix with gluten-free chex cereals

gluten-free Rice Krispies treats (recipes are online)

CHEBE pizza and breadstick mixes—very good

Check the labels of all packaged products-- if they were made with wheat or malt gluten, they will state so on the package.

LUNCH and DINNER:

Leftovers from last night's dinner make an easy lunch

Some Progresso soups are gluten-free. Check the label!

A sandwich with gluten free bread or rolls—UDIs, Scharr's and Canyon Bakehouse are decent packaged breads, rolls and bagels, but homemade is the way to go.

I have a simple recipe for white sandwich bread that is delicious if you want it.

A big salad with tons of veggies and grilled chicken or shrimp and Hard-boiled eggs/ with gluten-free or homemade vinegrette dressing. A list of gluten free salad dressings is available online. Marzettis, and most of WishBone and Ken's are okay. Homemade is best!

Homemade vegetable minestrone ,chicken soup, stews, black bean or white bean chili (gluten-free stock)

chicken or bean nachos (can use corn tortillas)

red beans and rice

almost all mexican food is safe (just no flour tortillas!)

pasta and sauce w/meatballs (brown rice or corn pasta TINKYADA BRAND rice pasta is delicious! Cook 13 minutes exactly) and use gluten-free breadcrumbs (just crumble some gluten-free bread and season)

Another good pasta is CORN pasta. BiAglut or Sam's Hill. Cook as directed.

meatloaf (beef or ground turkey) baked potato or yams, green veggie of some kind

Other proteins: roasted or grilled chicken, turkey, pork, beef, salmon, talapia, scallops, lamb, some sausages are safe, bacon (Check labels)

Vegetarian chili--homemade.

I eat a variety of veggies..whatever looks fresh at the super market or farmer's market or stands...steamed, grilled--- or roasted root veggies in stock.

Sweet potatoes—baked at 350 degrees in a pan for 45-50 mins.--are yummy

Potatoes—roasted, grilled, whipped with milk

Fritattas with veggies and salad

Stuffed peppers—with ground turkey, beef or lamb and rice

ANY recipe can be altered--just use gluten-free breadcrumbs, or rice pasta ---use any flour made from amaranth, corn, bean, etc...just NO WHEAT, RYE OR BARLEY or cross -contaminated OATS. Quaker oats are Cced!!. Bob's Red Mill are not.

Cross-contamination is the bane of our existence. Learn how to make your home safe.

Open Original Shared Link

Hidden sources of gluten:

Open Original Shared Link

Packaged/processed Foods:

A package stating a product is “Gluten-free “ does not always guarantee it was processed and manufactured and packaged in a dedicated facility. You want the GIG (Gluten Intolerance Group) circle stamped on the package –it is a big gluten-free in a circle.

Some DEDICATED gluten-free facilities are:

Bob's Red Mill

1-2-3 Meredith's Marvelous

Authentic Foods

Pamela's

Cause You're Special

Udi's

The Cravings Place

Andean Dream

Kinnikinnick

Organic Nectars

Orgran

Foods by George

gluten-free FULL FLAVOR Gravy

Prana Bar

Enjoy Life

EnergG

Gillian's

They make all kinds of ready made mixes and flours to make it easy to start baking.

The cooking and baking section on the forum has thousands of great ideas—these guys are amazingly creative!

That should get you started. No need to fear eating!

Best wishes!

LoriLynn Newbie

This info was compiled for my family and those with NCGI and newly Dxed Celiacs and is a starting point for information about celiac/gluten intolerance. This site is full of valuable information and people who care.

For info:

Open Original Shared Link

Open Original Shared Link

Dietary concerns

IrishHeart Veteran

Be sure to read the section on CC (cross contamination) because that is what usually trips us up.

Toaster, wooden cutting boards, plastic colanders--have to go.

let us know what else we can do!

Best wishes.

Keep me posted on your progress!

IH

frieze Community Regular

could you post your CBC?

Also, you should have a methylmalonic acid level, and a homocysteine level done.

somthing in your body is preventing the use of all that iron in making red blood cells. you need to find that out, asap. Open Original Shared Link

From above: Some doctors, hearing complaints of fatigue and knowing little about the condition, may prescribe vitamins with iron. And ironically, it is possible to have both hemochromatosis and anemia, as there are different forms of anemia, according to the American Liver Foundation. In any case, people with iron overload should avoid iron supplements. Doctors recommend that they also avoid vitamin C supplements and alcohol, both of which increase iron absorption

Open Original Shared Link

LoriLynn Newbie

could you post your CBC?

Also, you should have a methylmalonic acid level, and a homocysteine level done.

somthing in your body is preventing the use of all that iron in making red blood cells. you need to find that out, asap. Open Original Shared Link

From above: Some doctors, hearing complaints of fatigue and knowing little about the condition, may prescribe vitamins with iron. And ironically, it is possible to have both hemochromatosis and anemia, as there are different forms of anemia, according to the American Liver Foundation. In any case, people with iron overload should avoid iron supplements. Doctors recommend that they also avoid vitamin C supplements and alcohol, both of which increase iron absorption

Open Original Shared Link

Hi Frieze,

My CBC (the latest taken 10/6/11) was as follows (and please forgive me if I'm giving too much information. Unfortunately, I just don't understand much about labs at all). Here goes...

Complete Blood Count:

WBC 6.5 (range of 4.3-11.0)

RBC 3.85 (range of 3.97-5.19) flagged as "low"

Hemoglobin 11.6 (range of 11.8-15.9) flagged as "low". This was AFTER being on 2 pre-natal vitamins a day x 1 month. Previous Hemoglobin from 9/1/11 was 11.3)

Hematocrit 35.5 (range of 36.4-47.7) flagged as "low"

MCV 92.2 (range of 82/8-99.8)

MCH 30.1 (range of 26.7-33.2)

MCHC 32.7 (range of 31.0-34.8)

RDW-CV 12.8 (range of 12.2.-15.1)

RDW-SD 43.3 (range of 39.6-51.2)

Platelet Count 288 (range of 177-414)

Mean Plt Volume 10.8 (range of 9.4-12.8)

Neutrophil 54.3

Lymphocyte 33.6

Monocyte 10.5

Eosinophil 1.1

Basophil 0.5

Neutrophil ABS 3.52 (range of 1.80-7.80)

Lymphocyte ABS 2.18 (range of 1.00-4.00)

Monocyte ABS 0.68 (range of 0.20-0.80)

Eosinophil ABS 0.07 (range of 0.00-0.45)

Basophil ABS 0.03 (range of 0.00-0.20)

I don't show anywhere where I may have had a methylmalonic acid level, and a homocysteine level done.

Please tell me if you have any ideas or input about these labs. I appreciate everyone's help!!

Lisa Mentor

Be sure to read the section on CC (cross contamination) because that is what usually trips us up.

Toaster, wooden cutting boards, plastic colanders--have to go.

let us know what else we can do!

Best wishes.

Keep me posted on your progress!

IH

Super list IH! I expect hundreds will enjoy it. :D

IrishHeart Veteran

Those two numbers flagged as "low" are not so low that they are worrisome. .1 and .2 are minuscule) The hematocrit is off by 1. They can be off just a bit any time blood is drawn.

My TSH, RBC and hematocrit were off by the same amounts as yours in the latest workup (whereas 3 months before, it was perfect) and my doc said "that's because of your accidental glutening". He said: "Not to worry".

I am more concerned about your very high ferritin storage level and what KIND of anemia you have. It's not iron def. or the red blood cell count would be very low. It's not.

Someone else can weigh in here with his/her thoughts.

I am no expert, but I have had plenty of labs done and learned what they all mean (because who tells us that? :lol:) and these lab results seem nearly normal to me. That's good!

IrishHeart Veteran

Super list IH! I expect hundreds will enjoy it. :D

I am happy to provide it for newbies. :) It took me awhile to figure all that stuff out, so I kept it all in a file.

It was compiled for someone in my family who said "I CAN'T do this! There's absolutely nothing left to eat. I don't know what to buy! I don't know what make!"

I sent it nearly a year ago. She still hasn't started it.

I offered it to over 50 relatives. No takers. :(

But it circulates on here and my PT (and her gluten intolerant family) was happy to receive it. She asked it she could give it to her clients (sure, why not?! :) ) and some people I meet at the local gluten-free cafe felt it helpful.

So, although the intended people did not use it, it still has it's purpose. So, it's all good.

Ninja Contributor

Thank you IrishHeart for the wonderful list!

IrishHeart Veteran

Thank you IrishHeart for the wonderful list!

You bet! :) Hope it helps.

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    • fritz2
      So what relieves the joint pain?
    • trents
      Welcome to the forum, @Nikki03! What was the other result from the other physician's lab work? The test result you report in your post is not a celiac disease diagnostic test. It is a test for IGA deficiency. It is also known as "total IGA". There are other IGA antibody tests that are used to diagnose celiac disease but if you are IGA deficient, their scores will be artificially low. Obviously, you are not IGA deficient so if there were other IGA antibody tests run they should be trusted as accurate unless you had been on a gluten free or reduced gluten diet before the blood sample was taken. So, if you have other test results, please post them along with (this is important) their reference ranges. Raw test scores without reference ranges are not necessarily helpful as different labs used different reference ranges. Here is an article that describes the various antibody tests that can be ordered when checking for celiac disease: As you can see, there are IGA tests and there are IGG tests. What are your symptoms? There is another gluten disorder known as Non Celiac Gluten Sensitivity (NCGS) that shares many GI symptoms with celiac disease and is 10x more common than celiac disease. There are no tests for NCGS so celiac disease must first be ruled out by formal testing.
    • Nikki03
      I had celiac labs done and got two different result from two physicians. I have tons of celiac symptoms and suspected it for a while now but this has me so confused can you help?    my labs results read as follows  immunoglobulin A QN =419 which was off the chart high but everything but that was in normal range.               Thanks sincerely confused!   
    • trents
      As I mentioned above, NCGS stands for Non Celiac Gluten Sensitivity. Celiac disease and NCGS share many of the same GI distress symptoms but NCGS does not damage the lining of the small bowel as does celiac disease and is not an autoimmune condition, as is celiac disease. NCGS is 10x more common than celiac disease but there are no tests for it. Celiac disease must first be ruled out. We actually know much more about celiac disease than we do about NCGS. Some experts believe NCGS can be a precursor to celiac disease. The only known antidote for either is total abstinence from gluten. Joint pain is a well-established symptom of celiac disease, one of the more than 200 symptoms on a growing list. And many of them present as non-GI related.
    • fritz2
      Well, as much pain as gluten has caused in the past, there's no way in hell I'm taking gluten on purpose.  What is NCGS?  And are there any remedies to quickly get over the swollen joints? My joints are swollen and hot to the touch and hurt.  For about two weeks they were too painful to even think about using them.  Six weeks later, I still can barely use my hands.  I struggle to get a bottle cap unscrewed they hurt so badly.  Edema in my legs and the knees hurt to walk.  And that was probably a minor exposure as the wheat was listed towards the end of the "contains" list in very fine print we couldn't read without a magnifying glass.
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