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Gluten Intolerant, Celiac, Or Something Else?

RCrown2

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RCrown2 Newbie
RCrown2
Posted

Hi All! I have been having many symptoms of celiac disease or gluten intolerance but have never seen a doctor until now. My wife and I are trying to conceive and we found I have low testosterone. After several subsequent tests, doctors have confirmed I have iron deficient anemia.

I am a healthy 28yo male, 5'10, 160lbs, and maintain a healthy diet of fresh fruits, veggies, beans, and lean meats. My diet should provide the nutrients I need, but my iron is pretty low. They did a stool test to check for blood loss but nothing

was found there.

My symptoms include constant bloating to where my stomach is distended (I'm under 10% bodyfat and this looks weird to me), chronic fatique, very high anxiety, irritability, knuckle joint pain in both hands, and infertility to name the biggest ones.

Is is possible to have a normal blood results but still have celiac disease or intolerance? It seems that my unexplained anemia would point to celiac disease, but do not know enough on the topic.

The most noticeable thing is my low iron and ferritin; here is my anemia panel and celiac blood test results. Please let me know if anyone else has gone or is going through a similar situation; I just want to be sure. Also, I had eliminated almost all gluten from my diet one week before these lab tests.

Iron Bind.Cap.(TIBC) = 370

UIBC = 338

Iron, Serum = 32

Iron Saturation = 9

Ferritin, Serum = 7

WBC = 3.9

RBC = 4.17

Hemoglobin = 11.1

Hematocrit = 34.5

MCV = 83

MCH = 26.6

MCHC = 32.2

RDW = 14.9

Deamidated Gliadin Abs, IgG = 3

Deamidated Gliadin Abs, IgA = 4

Endomysial Antibody IgA = Negative

t-Transglutaminase (tTG) IgA = <2

t-Transglutaminase (tTG) IgG = <2

Immunoglobulin A, Qn, Serum = 214

Thanks in advance for any help!

RC

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GFinDC Veteran
GFinDC
Posted

HI RC, welcome to the site!

Yes, it is possible to have negative blood antibody tests results and still have celiac disease. It happens fairly often in fact. The other test the can do is the endoscopy6 and take biopsy samples of the villi lining the small intestine. They check the biopsy samples for damage to the villi. Since celiac causes malaborptoin of nutrients, it is not unusual for people to be low in Vitamins such a s D, K, B , and Iron etc. Infertility is a known problem with celiac but can reverse with the gluten-free diet. Some people who have celiac never test positive for it.

I have added a list of threads with helpful information. Please look at the last one regarding non-celiac wheat sensitivity. This is something researchers are now starting to learn about and there are no tests for it right now.

Some starting the gluten-free diet tips for the first 6 months:

Get tested before starting the gluten-free diet.

Don't eat in restaurants

Eat only whole foods not processed foods.

Eat only food you cook yourself, think simple foods, not gourmet meals.

Take probiotics.

Take digestive enzymes.

Avoid dairy.

Avoid sugars and starchy foods.

Avoid alcohol.

FAQ Celiac com

https://www.celiac.com/gluten-free/forum-7/announcement-3-frequently-asked-questions-about-celiac-disease/

Newbie Info 101

What's For Breakfast Today?

What Did You Have For Lunch Today?

What Are You Cooking Tonight?

Dessert thread

Easy yummy bread in minutes

How bad is cheating?

Short temper thread

Non celiac wheat sensitivity article

Open Original Shared Link

frieze Community Regular
frieze
Posted

Hi All! I have been having many symptoms of celiac disease or gluten intolerance but have never seen a doctor until now. My wife and I are trying to conceive and we found I have low testosterone. After several subsequent tests, doctors have confirmed I have iron deficient anemia.

I am a healthy 28yo male, 5'10, 160lbs, and maintain a healthy diet of fresh fruits, veggies, beans, and lean meats. My diet should provide the nutrients I need, but my iron is pretty low. They did a stool test to check for blood loss but nothing

was found there.

My symptoms include constant bloating to where my stomach is distended (I'm under 10% bodyfat and this looks weird to me), chronic fatique, very high anxiety, irritability, knuckle joint pain in both hands, and infertility to name the biggest ones.

Is is possible to have a normal blood results but still have celiac disease or intolerance? It seems that my unexplained anemia would point to celiac disease, but do not know enough on the topic.

The most noticeable thing is my low iron and ferritin; here is my anemia panel and celiac blood test results. Please let me know if anyone else has gone or is going through a similar situation; I just want to be sure. Also, I had eliminated almost all gluten from my diet one week before these lab tests.

Iron Bind.Cap.(TIBC) = 370

UIBC = 338

Iron, Serum = 32

Iron Saturation = 9

Ferritin, Serum = 7

WBC = 3.9

RBC = 4.17

Hemoglobin = 11.1

Hematocrit = 34.5

MCV = 83

MCH = 26.6

MCHC = 32.2

RDW = 14.9

Deamidated Gliadin Abs, IgG = 3

Deamidated Gliadin Abs, IgA = 4

Endomysial Antibody IgA = Negative

t-Transglutaminase (tTG) IgA = <2

t-Transglutaminase (tTG) IgG = <2

Immunoglobulin A, Qn, Serum = 214

Thanks in advance for any help!

RC

Open Original Shared Link

it may well be that you are D deficient, which may lead to low testosterone. good luck

found this as well, Open Original Shared Link

RCrown2 Newbie
RCrown2
Posted
  • Author

Thank you both for the informative replies and links, these are very helpful.

I have been following most of the tips GFinDC listed for several years with the exception of having dairy, a little alcohol, and starchy foods like oats and sweet potatoes. Obviously, I know those things are big triggers and I am going to cut out or limit these now.

I'm a huge fan of Greek yogurt, that will be hard to let go, but it's for the greater good. Since kefir is virtually lactose free, has anyone successfully kept that as a form of dairy in their diet?

As for a biopsy, can someone who had this done tell me what to expect? Just wondering on how long it takes and any associated pain.

Thanks again for the help, so glad I found this site!

GFinDC Veteran
GFinDC
Posted

HI Rc,

There are a couple possible issues with dairy. Lactose is the sugar in cow dairy that causes symptoms when you can't digest it. Casein is the main protein it and it can cause reactions also. Lactase is the enzyme made by our bodies to digest lactose. Lactase is made by the villi in the small intestine. So, man of us can't digest lactose at first because of damage to the villi. If that is the only problem then it may be possible to digest the dairy after 6 months or so on the gluten-free diet and some healing. If casein is the problem that tends to be a permanent problem.

So the answer is, some people get dairy back, and some people don't get dairy back.

Often people ask how to tell if it is a lactose or a casein problem. Hard cheese are mostly casein, so you can stop all dairy first for a week or 2 and then try some hard cheese for 3 days running. If you don;'t have a problem then casein is probably ok.

The other option is try lactaid milk which has the lactose pre-digested but still has casein in it.

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