Unusual Question

[Brit1612]

So, I know y'all probably get a lot of the same types of questions a lot on this board, but I think I have a question you have never heard before .  I don't usually discuss this with anyone (other than family), but I am going to share because I am curious.

 

My boys (2 and 4 ,,,,the 2 year old is why I am on this board, in the process of possibly being diagnosed with celiac) were brought into this world using donor embryos (not eggs or sperm, but embryos).  So, technically they are not biological to either my husband or myself, but I carried both of them.  Which makes the "family history" part difficult.

 

I know that celiac is genetic and we know that he does have two of the genes related to celiac......

 

While reading on this forum I found some post talking about wether or not the antibodies could be passed to a newborn through breastfeeding.  About the same time I went into the dr to request I have my blood levels checked considering I was VERY addicted to eating ice and I knew that could be a sign of anemia.

 

Long story short, I had a hemoglobin of 7.7 (very anemic) and had to have two iron infusions.  The IDA was considered to be caused by the extreme periods (heavy bleeding) that I have had ever since giving birth to my boys.  Which makes perfect since (I was loosing A LOT of blood).

 

While reading about my anemia and also about celiac I continue to hear how often celiacs are anemic and how they also have unusual periods.  I can't help but let the thought "could I be celiac" run into my head.  I'm sure this is a complete stretch and a result of me reading WAY too much on the internet.

 

 But I am curious if it is something I should even consider, or if it is possible, that I could be the one to "give" my son celiac (through breastfeeding) even though he is not genetically mine?

 

I have no GI symptoms or anything to really make me think I could have celiac.  I am a very healthy 30 year old, periods have always been perfectly normal up until having kids, never even go to the doctor.  In fact, the only reason I finally went in and found out I was anemic is because I was having weird feelings in my chest ( and I know the chest is not something to mess around with).  I was told the chest palpitations were due to the severe anemia.

 

Sorry this was so long!  Just curious.....

[BlessedMommy]

If you have unexplained anemia, it is a good idea to get checked for celiac. There are a lot of celiacs with no GI symptoms.

[bartfull]

I think they say that some 30% of people have a gene for celiac. (Keep in mind though that not everyone who has a gene for it will go on to develop it.) That means the odds of your kids having a celiac gene and for you too to have a celiac gene are not astronomical.

 

I don't THINK it would be possible to pass it along in breast milk, but I don't know for sure.

[notme]

Open Original Shared Link

 

something interesting i read recently (although the article is a few years old)  not such an unusual question  really started to blow my mind, being as i have given birth to children from 2 different men - so, did the younger one get any genes from my ex (i hope not!) and, being as my pregnancy triggered my celiac, did my son's genes trigger it (which would be my ex's fault - haha - such a tool.... )

[cyclinglady]

I was diagnosed in 2013. Anemia was my only symptom at the time (already knew about thyroid and allergy issues). Hubby went Gluten free 14 years ago per the bad advice of his GP and my allergist (we wish he had been tested since his mom had MS and another autoimmune disorders run in his family).

We assume he has celiac disease. We know that gluten is poison for him. He'll never do a challenge now. But what are the odds that both of us would have it? To date our kid has tested negative.

So, you could have two people in your family who are not genetically related have celiac disease. I think both another poster, Squirmitch and her hubby both have DH (celiac disease skin rash).

Oh, do not fall for that heavy period line....I had some 30 day periods the year before I passed through menopause. I was extremely anemic, like you. I already have Thalassemia, a genetic anemia that ended up masking iron-deficiency anemia. I would take supplements, but never was able to build up my iron stores (ferritin level). Docs blamed the periods and Thals. I was diagnosed with celiac disease during a routine colonoscopy consult (thank you GI doc!) after not having a period for four months. My ferritin level was still low. Find out why you have anemia!

[StephanieL]

Any gene that a person has is there from conception (no matter where it takes place).  You do not pass genes on through breastmilk. You could not have "given" them to your kiddo.   As stated, Celiac isn't that uncommon so them and you having the genes isn't unusual if you all do.

[Brit1612]

cyclinglady - I had my blood levels rechecked a couple months after the iron infusions and they had went back up from a 7.7 to an 11.5.  I have often heard that celiacs who are anemic have trouble getting their numbers back up to normal.  I don't know what my ferritin(sp?) is now, but it was almost a 0 when it was checked initially.  I honestly didn't even have symptoms ( other than the ice chewing and occasional heart palpitations).  

 

Warning TMI: The hematologist said he was "certain my anemia was caused by my heavy periods".  Also, just before being tested I had the worst period I had ever had.  Just to be clear about how heavy it was......  I bled through a small box of super tampons and an average size pad (with each tampon) in an hour.  At one point, I changed it, walked to the kitchen, and had to immediately go back and change it again.  This was more than my typical heavy period though.  My periods always come on a regular basis, just are heavier than the average person.  But now they put me on hormones to keep me from bleeding so heavy.

 

You say "find out why you were anemic", how do I do this, and how do I know it wasn't just the heavy periods?

 

 

Thanks everyone - I know that it is not that unlikely for us both to possibly have the genes but it seems like it would be unlikely for us both to have the disease itself.  

 

Oh, the other thing that got me thinking in this direction was our infertility in the first place.  We have male factor infertility, I was "perfectly fine".  But we had three miscarriages (one was with donor embryos), and the meds did not have the same effect on me as your "typical 20 something year old women.  I had to inject double the progesterone that the average joe would use to keep my levels up during the early days of pregnancy (before the body kicked in and produced it). But with all that being said, I went on to carry my boys full term with no problems ( no anemia either).

 

I feel like I am likely making something out of nothing, but it is hard to not think "what if...." when you keep reading things could be tied to celiac, basically everything!

[Brit1612]

I know I can't "give" them the genes......

 

What I was wondering was if the antibodies could be passed through breastmilk, I had read this on the forum somewhere, and if the exposure to them could "trigger" celiac (considering I already know he has the genes).

[Brit1612]

If you have unexplained anemia, it is a good idea to get checked for celiac. There are a lot of celiacs with no GI symptoms.

 

Would this be considered "unexplained"?  The hematologist thought the bleeding was the explanation.

[bartfull]

The miscarriages might be related to celiac. You say you don't have any gut symptoms but there are something like 300 possible symptoms - things like rashes and insomnia and headaches and a host of things you'd never believe were related.

 

And then there are those who have "silent celiac" - people who have no symptoms at all but were diagnosed during routine testing.

I may sound obsessive, but IMO just about everybody should be tested for that reason, because even if they don't have symptoms, the damage they may be doing to their bodies and long term health could possibly be avoided.

[cyclinglady]

Let's see if I can explain it. The Thalassemia means tiny blood cells. Hard to get in oxygen, but my case is mild. Hemoglobin is always just out of range or just within the range barely. Each period would cause a slight drop in hemoglobin (when I was young). By the next period, I would recover. But, what never really recovered over the years was my ferritin level (iron stores). I was processing iron (per my blood work), but not enough to replenish the stores. Then I hit the last perimenopausal year. I bled like you. Hemoglobin dropped super low. I could not breathe just sitting in a chair (I am athletic). Even with added iron, (and iron is not needed for Thals) I was not able to recover the iron stores fast. GYN wanted to do surgery. I got two other opinions and decided to keep my uterus (I do have fibroids). Docs even thought heel strikes from running might have been causing my anemia at one point.

All these years, I think I had celiac disease. I know because I have kept records since 1996. Not one doctor caught it. My ferritin levels were always very low. I was just advised to eat iron-rich foods and take supplements, which up helped temporarily, but did not solve the problem. When hemoglobin was low, they said it was due to Thals. It was, but it wasn't the only reason.

Ferritin levels are up (gluten-free almost two years) and I no longer supplement. Hemoglobin level is just barely within range which is just right for me! What amazes me is how your body can adapt to low iron stores.

I urge you to be your own advocate for your health (you already are by researching on this forum). Your anemia could very well be due to your heavy periods or it could be something else! Just re-check your Ferrtin level. It should be way up there. Docs do not always check ferritin. They assume if the hemoglobin is in range and you are processing iron, then you are okay.

[Brit1612]

Let's see if I can explain it. The Thalassemia means tiny blood cells. Hard to get in oxygen, but my case is mild. Hemoglobin is always just out of range or just within the range barely. Each period would cause a slight drop in hemoglobin (when I was young). By the next period, I would recover. But, what never really recovered over the years was my ferritin level (iron stores). I was processing iron (per my blood work), but not enough to replenish the stores. Then I hit the last perimenopausal year. I bled like you. Hemoglobin dropped super low. I could not breathe just sitting in a chair (I am athletic). Even with added iron, (and iron is not needed for Thals) I was not able to recover the iron stores fast. GYN wanted to do surgery. I got two other opinions and decided to keep my uterus (I do have fibroids). Docs even thought heel strikes from running might have been causing my anemia at one point.

All these years, I think I had celiac disease. I know because I have kept records since 1996. Not one doctor caught it. My ferritin levels were always very low. I was just advised to eat iron-rich foods and take supplements, which up helped temporarily, but did not solve the problem. When hemoglobin was low, they said it was due to Thals. It was, but it wasn't the only reason.

Ferritin levels are up (gluten-free almost two years) and I no longer supplement. Hemoglobin level is just barely within range which is just right for me! What amazes me is how your body can adapt to low iron stores.

I urge you to be your own advocate for your health (you already are by researching on this forum). Your anemia could very well be due to your heavy periods or it could be something else! Just re-check your Ferrtin level. It should be way up there. Docs do not always check ferritin. They assume if the hemoglobin is in range and you are processing iron, then you are okay.

 

So, I just looked up my ferratin level.  It was a 4 and the range was 6-137, this was when I was initially tested.  I don't think it was retested when the hemoglobin was re-tested.

 

On the new test results when my level was up to an 11.6 (from a 7.7) I did notice these levels were still not in the normal range.....(The doctor didn't mention anything about them.  Just said I was "back to normal" and to continue doing what I was doing".)

 

The number on the right is my number the standard range is in the middle.

MCV 80.6 - 95.5 FL 77.4 MCH 25.9 - 32.8 PG 24.8

 

When I googled these test, back when I saw they were still not in range (they were even lower before the iron infusion) I noticed one of them mentioned something about celiac.  But I honestly don't remember which one and I don't know what either of these test really are?

 

I did have an ultrasound done and there was a fibroid / cyst (they weren't sure which one) and requested that I have an additional ultrasound ran (more expensive).  They siad the fibroid was fairly small and that it may or may not be the reason for the heavy bleeding.  I have not done it yet because of financial reasons.  With all the testing we are doing with the little guy at this point, the medical bills are becoming overwhelming.

 

Thanks for all the info!  Do you have any knowledge about the test I shared above?  Thanks again!

[nvsmom]

Could your bleeding be related to hypothyroidism (which is more common among celiacs)?  I did not realize my periods were so heavy until my thyroid was treated a  few years ago.  My periods used to be 7-10 days and the first 5 were heavy enough that if you did not  get up in the night to take care of things, I had a mess on my hands.   Since having my thyroid treated (which actually began around the same time I went gluten-free, my periods are much more regular, shorter, and lighter.

 

I also wanted to ask if you had your platelet levels checked? Thrombocytopenia can cause very heavy periods because your body isn't clotting. I have ITP, an autoimmune version of this were my white blood cells kill off my platelets, which I strongly suspect was started due to my untreated celiac disease. I had a 20 day and then a full cycle period and by the time the doctors got it figured out I should have had a blood transfusion and they had to put me on the morning after pill for a few weeks just to stop the flow. Anyways... could be something to check out too.

 

As for the autoantibodies being passed to the baby... I don't know. I'll keep my eye open for info on it.

[RMJ]

Antibodies can be passed through breast milk, but they cannot cause the recipient to make more of those antibodies.

[cyclinglady]

So, I just looked up my ferratin level.  It was a 4 and the range was 6-137, this was when I was initially tested.  I don't think it was retested when the hemoglobin was re-tested.

 

On the new test results when my level was up to an 11.6 (from a 7.7) I did notice these levels were still not in the normal range.....(The doctor didn't mention anything about them.  Just said I was "back to normal" and to continue doing what I was doing".)

 

The number on the right is my number the standard range is in the middle.

MCV

80.6 - 95.5 FL

77.4

MCH

25.9 - 32.8 PG

24.8

 

When I googled these test, back when I saw they were still not in range (they were even lower before the iron infusion) I noticed one of them mentioned something about celiac.  But I honestly don't remember which one and I don't know what either of these test really are?

 

I did have an ultrasound done and there was a fibroid / cyst (they weren't sure which one) and requested that I have an additional ultrasound ran (more expensive).  They siad the fibroid was fairly small and that it may or may not be the reason for the heavy bleeding.  I have not done it yet because of financial reasons.  With all the testing we are doing with the little guy at this point, the medical bills are becoming overwhelming.

 

Thanks for all the info!  Do you have any knowledge about the test I shared above?  Thanks again!

The results you showed were from a CBC panel. I am not a doctor, but I would not worry with these results. I think you first have to focus on eliminating a Celiac disease diagnosis. celiac disease can mess up so many things! Your hemoglobin is good, but that is not good enough. Your doctor should be concerned about your iron stores (ferritin). I was at a 2 and at 1-1/2 years later, with intestinal healing, I am at a 75. I ceased iron supplements six month into my celiac disease diagnosis.