Blood tests and symptoms

[Tiwa]

Hey. I’m a 17 yo girl who coincidentally found out I might have celiac disease cause my growth curve flattened, but I can’t really understand how. Cause I don’t have many typical symptoms I think. So how possible is it? That’s my question.
I got tested last year and I had tTG IgA levels 21 U/ml (7 u/ml upper limit) HLA Dq2 and biopsies showed mars grade 1. I didn’t get a diagnosis then, but now I recently  got a new blood test that showed 31 U/ml so I’ll have to do a new endoscopy. What does the blood test mean? Is it very high over normal? Will the mars grade be higher now you think? 

And when talking about symptoms I might experience some but I don’t think that they are very common. Do you know if these symptoms can be caused by celiac disease?

- I haven’t got my period yet (never had one)

- I get nausea when training after a meal

- I often see light red blood in the stool or a yellow liquid out of the brown poop 

- I get mild diharrea when I'm nervous and after intense running. 

- I get constipated if I don't drink coffee but if I do I get diarrhea instead. 

- I'm freezing a lot, have dry skin, and I'm pale 

- my bones and knuckles make a lot of noise and my knees hurt 

 

 

 

 

[trents]

Tiwa, welcome to the forum!

To the contrary, you actually do have a grocery list of typical celiac symptoms. I'm not sure why you say you don't. Most of the symptoms you list are common and/or classic for celiac disease.

Your blood test antibody numbers are not strikingly high but high enough to be unequivacable and they are increasing.

Your marsh (not "mars") score indicates you have caught the villi damage at an early stage.

 

[Tiwa]

5 minutes ago, trents said:

Tiwa, welcome to the forum!

To the contrary, you actually do have a grocery list of typical celiac symptoms. I'm not sure why you say you don't. Most of the symptoms you list are common and/or classic for celiac disease.

Your blood test antibody numbers are not strikingly high but high enough to be unequivacable and they are increasing.

Your marsh (not "mars") score indicates you have caught the villi damage at an early stage.

 

Oh, thank you. Well I have a friend who is celiac and she said she doesn't think I have it cause then I would have felt much worse than that. Cause when she gets ill she gets diarrhea and she throws up. And I never wanted to think I could have it either but when I took the blood test now I started to wonder if there were any chance that I could have symptoms. So I found this forum page to ask someone cause I'm a little confused and stressed about what I might have and I haven't got much information. But thank you. 

[RMJ]

There are many possible symptoms for celiac disease but some people have celiac disease without any of the usual symptoms - it is called silent celiac disease.  That is what I have.  I was tested because I have the genetic markers and migraine headaches.

What I’m trying to say is, just because your symptoms are different from your friend does not mean you don’t have celiac disease.  

[Tiwa]

1 minute ago, RMJ said:

There are many possible symptoms for celiac disease but some people have celiac disease without any of the usual symptoms - it is called silent celiac disease.  That is what I have.  I was tested because I have the genetic markers and migraine headaches.

What I’m trying to say is, just because your symptoms are different from your friend does not mean you don’t have celiac disease.  

But if you don't feel very ill when eating gluten why do you have to eat gluten-free then?

[Tiwa]

I find it very difficult to stop eating the food I love, if I have this. 

[RMJ]

19 minutes ago, Tiwa said:

But if you don't feel very ill when eating gluten why do you have to eat gluten-free then?

Good question. Because gluten is still making my body damage itself, even if I don’t feel the damage. It is an autoimmune disease meaning I have antibodies against my own tissues. My endoscopy showed damage in my intestines.

[Tiwa]

2 minutes ago, RMJ said:

Good question. Because gluten is still making my body damage itself, even if I don’t feel the damage. It is an autoimmune disease meaning I have antibodies against my own tissues. My endoscopy showed damage in my intestines.

Ok. So that means you can't cheat once in a while?

[RMJ]

1 minute ago, Tiwa said:

Ok. So that means you can't cheat once in a while?

No I can’t cheat. It would be like a booster shot, increasing the damaging antibodies again.

[Tiwa]

Just now, RMJ said:

No I can’t cheat. It would be like a booster shot, increasing the damaging antibodies again.

Ok. That's so sad! I hope my test results are wrong cause we're travelling to France next year and I can't live without croissants 😵‍💫

[RMJ]

1 minute ago, Tiwa said:

Ok. That's so sad! I hope my test results are wrong cause we're travelling to France next year and I can't live without croissants 😵‍💫

Paris has several wonderful gluten free bakeries. I don’t particularly like croissants so don’t remember if they had them, but I had a wonderful eclair.

[trents]

54 minutes ago, Tiwa said:

I find it very difficult to stop eating the food I love, if I have this. 

Tiwa,

You have a choice. You can ignore this new reality, enjoy your food and friends, and probably be able to pull it off for a while without a lot of physical discomfort. But over time it will catch up to you and as more damage is done to your small bowel lining from the celiac disease, the symptoms will worsen and their may be more collateral damage to other body systems that can't be reversed such as neurological damage and osteoporosis. The damage that celiac disease does to the lining ("villi") of your small bowel results in losing the inability to absorb nutrients (vitamins and minerals) from your food and over time that has many repercussions for your whole body.

Or, you can dish the denial and take the responsibility of this new reality and the lifestyle changes it demands in order to guard your health. When you are 17 it is very difficult to focus on doing smart things to protect yourself against things that won't happen for years down the road. I used to be 17 so I know what I'm talking about. Committing to eating gluten free will have a major impact on your social life. But that is now reality.

[trents]

1 hour ago, Tiwa said:

I hope my test results are wrong cause we're travelling to France next year and I can't live without croissants 😵‍💫

They aren't wrong. And your listed symptoms corroborate the tests. That's wishful thinking.

[Tiwa]

1 hour ago, trents said:

They aren't wrong. And your listed symptoms corroborate the tests. That's wishful thinking.

That's a bit though to hear. I should probably listen to my doctor then. I don't want to get other health problems. If it makes my life better it may be worth it.

[Wheatwacked]

On 12/4/2021 at 3:36 PM, Tiwa said:

I can't live without croissants

It is addictive.   https://www.goodforyouglutenfree.com/how-i-overcame-my-gluten-addiction/

After a month on a gluten free diet GFD you will wonder when the pain went away. If you go back to gluten the pain will come back. Because of the damage done to your small intestine you get malabsorbtion syndrome, where even if you eat adequate vitamins and minerals you don't absorb enough. So some of your symptoms may be from deficiencies, the onset is slow so it is hard to tell, and they are often dismissed as part ot growing up and normal for some people.  Stick to your guns when peer pressure tries to convince you that it is only in your head. 

- I haven’t got my period yet (never had one)- https://www.runnersworld.com/health-injuries/a20855296/what-runners-need-to-know-about-missing-their-periods/

- I get nausea when training after a meal

- I often see light red blood in the stool or a yellow liquid out of the brown poop- eat more oatmeal and beans for more fiber. 

- I get mild diharrea when I'm nervous and after intense running. fiber.

- I get constipated if I don't drink coffee but if I do I get diarrhea instead. Coffee is a good source of potassium.

- I'm freezing a lot, have dry skin, and I'm pale - multiple vitamins and minerals deficiency.

- my bones and knuckles make a lot of noise and my knees hurt - to me it was like the gluten turned into grains of sand in my joints.

[Tiwa]

5 hours ago, Wheatwacked said:

It is addictive.   https://www.goodforyouglutenfree.com/how-i-overcame-my-gluten-addiction/

After a month on a gluten free diet GFD you will wonder when the pain went away. If you go back to gluten the pain will come back. Because of the damage done to your small intestine you get malabsorbtion syndrome, where even if you eat adequate vitamins and minerals you don't absorb enough. So some of your symptoms may be from deficiencies, the onset is slow so it is hard to tell, and they are often dismissed as part ot growing up and normal for some people.  Stick to your guns when peer pressure tries to convince you that it is only in your head. 

- I haven’t got my period yet (never had one)- https://www.runnersworld.com/health-injuries/a20855296/what-runners-need-to-know-about-missing-their-periods/

- I get nausea when training after a meal

- I often see light red blood in the stool or a yellow liquid out of the brown poop- eat more oatmeal and beans for more fiber. 

- I get mild diharrea when I'm nervous and after intense running. fiber.

- I get constipated if I don't drink coffee but if I do I get diarrhea instead. Coffee is a good source of potassium.

- I'm freezing a lot, have dry skin, and I'm pale - multiple vitamins and minerals deficiency.

- my bones and knuckles make a lot of noise and my knees hurt - to me it was like the gluten turned into grains of sand in my joints.

I think I got it. It’s just a bit frustrating to think about. I eat a lot of fiber and drink a lot of milk however my D-vitamin level is low, so I think that's the reason for those knuckle and bone sounds things. I have been taking supplements but they don't work. I've understood that this also may be due to gluten though. 

My doctor now said I had to trigger it. And she wanted me to try and get my IgA levels up to 70 which is ten times the upper limit and then I don't have to take biopsies. How is that possible to raise my levels from 31 to 70 in one month? And how much gluten do I have to eat?

[alpenglowapple]

On 12/4/2021 at 7:38 PM, Tiwa said:

Hey. I’m a 17 yo girl who coincidentally found out I might have celiac disease cause my growth curve flattened, but I can’t really understand how. Cause I don’t have many typical symptoms I think. So how possible is it? That’s my question.
I got tested last year and I had tTG IgA levels 21 U/ml (7 u/ml upper limit) HLA Dq2 and biopsies showed mars grade 1. I didn’t get a diagnosis then, but now I recently  got a new blood test that showed 31 U/ml so I’ll have to do a new endoscopy. What does the blood test mean? Is it very high over normal? Will the mars grade be higher now you think? 

And when talking about symptoms I might experience some but I don’t think that they are very common. Do you know if these symptoms can be caused by celiac disease?

- I haven’t got my period yet (never had one)

- I get nausea when training after a meal

- I often see light red blood in the stool or a yellow liquid out of the brown poop 

- I get mild diharrea when I'm nervous and after intense running. 

- I get constipated if I don't drink coffee but if I do I get diarrhea instead. 

- I'm freezing a lot, have dry skin, and I'm pale 

- my bones and knuckles make a lot of noise and my knees hurt 

 

 

Hi. I have the same symptoms, everything is the same. I have doctor appointment tomorrow so we will see   https://en.wikipedia.org/wiki/Gluten-free_diet

 

 

[trents]

Understanding the Marsh scale for evaluating damage to the small bowel lining: https://www.verywellhealth.com/marsh-stage-of-celiac-disease-562711

Tiwa, both your bloodwork and your Marsh evaluation indicate you have celiac disease but it appears you have caught it in the early stages. I'm afraid I disagree with you doctor's advice. Why torture yourself just to drive up your Marsh score while doing greater damage to your gut and potentially to other body systems? Your doctor seems to be behind the curve as far as diagnosing celiac disease. Most of us veteran celiacs will tell you that there is woeful ignorance about celiac disease within the medical community as a whole.

I think you have all the evidence you need to conclude you have celiac disease and as I see it, your next step ought to be committing to a gluten free diet in earnest. There is quite a learning curve when it comes to eliminating gluten from your life, however. It's not just a matter of not eating major sources of gluten like bread and pasta. Wheat/barley/rye are found in processed foods you would never expect like canned soups, soy sauce and even some chocolate syrup products. It can be in pills and supplements. It can be in rice and corn based breakfast cereals in the form of "malt flavoring". And then there is the whole issue of cross contamination where foods that don't naturally contain gluten come in contact with gluten containing foods in farming practices such as growing, transportation and storage. And in processing such that equipment used for wheat/barley/rye are also used for non gluten food products. In restaurants, gluten free foods are often contaminated by being cooked on the same grills or in the same vats and pots as gluten-containing foods or slices with the same knives. This might help:

 

[Tiwa]

1 hour ago, trents said:

Understanding the Marsh scale for evaluating damage to the small bowel lining: https://www.verywellhealth.com/marsh-stage-of-celiac-disease-562711

Tiwa, both your bloodwork and your Marsh evaluation indicate you have celiac disease but it appears you have caught it in the early stages. I'm afraid I disagree with you doctor's advice. Why torture yourself just to drive up your Marsh score while doing greater damage to your gut and potentially to other body systems? Your doctor seems to be behind the curve as far as diagnosing celiac disease. Most of us veteran celiacs will tell you that there is woeful ignorance about celiac disease within the medical community as a whole.

I think you have all the evidence you need to conclude you have celiac disease and as I see it, your next step ought to be committing to a gluten free diet in earnest. There is quite a learning curve when it comes to eliminating gluten from your life, however. It's not just a matter of not eating major sources of gluten like bread and pasta. Wheat/barley/rye are found in processed foods you would never expect like canned soups, soy sauce and even some chocolate syrup products. It can be in pills and supplements. It can be in rice and corn based breakfast cereals in the form of "malt flavoring". And then there is the whole issue of cross contamination where foods that don't naturally contain gluten come in contact with gluten containing foods in farming practices such as growing, transportation and storage. And in processing such that equipment used for wheat/barley/rye are also used for non gluten food products. In restaurants, gluten free foods are often contaminated by being cooked on the same grills or in the same vats and pots as gluten-containing foods or slices with the same knives. This might help:

 

Well I'm going to do a blood test in January and endoscopy in February so I think I'll have to eat gluten until then anyways. But I'm not going to torture myself to hard I think , Iast time I did endoscopy was in August 2020. So over a year ago.  Do you think it will be higher on the scale now even if I cut most gluten from my diet? I was told to eat at least 3 slices of bread every day since I naturally don't eat that much gluten, but since it has been over a year it may be okay anyway? Or... (I'm under 18 so I'll have to do the tests) 

[trents]

Three slices of wheat bread daily should be sufficient to give a valid test in February.

"(I'm under 18 so I'll have to do the tests)." I don't understand this. Are you saying you have no say in your medical decisions as a minor? Where do your parents stand on this?

[562celiac]

Based on your TTIGA test result, both your results (21 and 31) are higher than the norm value of 7, which means they're high. (Mine were over 100 on a 'norm' value of 4, so mine were HIGH.)

I don't understand why your doctor is asking you to reintroduce gluten for an endoscopy; if you get an endoscopy, they should just check if the damage has worsened or gotten better since your last one...?

Like others have said, your list of symptoms do scream celiac disease to me, but here are some other things to consider:

- I haven’t got my period yet (never had one) - have you checked for anemia? iron absorption may be affected by celiac disease. also, fertility/uterine problems, in general, may be occuring.

- I get nausea when training after a meal - are you eating enough nutrition-wise? if you're an athlete, you may need more/different components like protein/higher caloric intake

- I often see light red blood in the stool or a yellow liquid out of the brown poop - not a doctor, but this should indicate something wrong digestion-wise

- I get mild diharrea when I'm nervous and after intense running - again, may be nutritional deficiency. or, ask your doctor about anxiety.

- I get constipated if I don't drink coffee but if I do I get diarrhea instead. - coffee should not be used to stimulate going to the bathroom on a regular basis, the foods you eat should be doing enough (fiber, fruits/veggies)

- I'm freezing a lot, have dry skin, and I'm pale - poor blood circulation could be a cause, or a side effect of celiac. i had this and i thought it was rheumatoid arthritis or another autoimmune disorder. dry skin may occur from allergies - it is possible to have celiac disease AND have an allergy to wheat/soy/etc.

[Tiwa]

57 minutes ago, 562celiac said:

Based on your TTIGA test result, both your results (21 and 31) are higher than the norm value of 7, which means they're high. (Mine were over 100 on a 'norm' value of 4, so mine were HIGH.)

I don't understand why your doctor is asking you to reintroduce gluten for an endoscopy; if you get an endoscopy, they should just check if the damage has worsened or gotten better since your last one...?

Like others have said, your list of symptoms do scream celiac disease to me, but here are some other things to consider:

- I haven’t got my period yet (never had one) - have you checked for anemia? iron absorption may be affected by celiac disease. also, fertility/uterine problems, in general, may be occuring.

- I get nausea when training after a meal - are you eating enough nutrition-wise? if you're an athlete, you may need more/different components like protein/higher caloric intake

- I often see light red blood in the stool or a yellow liquid out of the brown poop - not a doctor, but this should indicate something wrong digestion-wise

- I get mild diharrea when I'm nervous and after intense running - again, may be nutritional deficiency. or, ask your doctor about anxiety.

- I get constipated if I don't drink coffee but if I do I get diarrhea instead. - coffee should not be used to stimulate going to the bathroom on a regular basis, the foods you eat should be doing enough (fiber, fruits/veggies)

- I'm freezing a lot, have dry skin, and I'm pale - poor blood circulation could be a cause, or a side effect of celiac. i had this and i thought it was rheumatoid arthritis or another autoimmune disorder. dry skin may occur from allergies - it is possible to have celiac disease AND have an allergy to wheat/soy/etc.

Well, if I don't do it I won't get economic support or a diagnosis. You have to have above marsh 2b to get diagnosed she told me. Just the rules of my country. Mum thinks it's stupid but they really can't do anything. That's the way it works. 

 

 

[trents]

Okay, thanks for explaining that. I suspected you were in the UK but wasn't sure. "Mum" gives it away.

[Tiwa]

aha, I live in Sweden 🙂

[trents]

9 minutes ago, Tiwa said:

aha, I live in Sweden 🙂

You must live on the side of Sweden closest to the UK.