Diagnosed with ttg iga level of 128 three days ago, trying to conceive or should I hold off?

[AmyHauchtest]

Met with my hematologist 3 days ago to get blood results relating to high platelet count, low iron and was told I have an extremely high level of ttg iga (128). I was told this is likely the cause of my iron deficiency and high platelets.  Through 3 months of high iron dosage my platelets are normal now but I need to immediately cut out gluten. I have to do an endoscopy to get a small biopsy of my intestine to confirm the blood results but doctor said not not expect any change to the diagnosis.

I am trying to conceive (impatient) as I have a 2.5 year old, had a stillbirth at 27 weeks then a miscarriage at 16 weeks. My fear is if I get pregnant now, I will miscarry due to my ttg iga levels. On the other hand, the miscarriage was caused by a subchroinic hematoma so perhaps unrelated to celiac. I desperately want to get pregnant again and soon. I just turned 37 and feel time is ticking. On the other hand I don't wish to be irresponsible or put myself through more agony.

Anyone get pregnant and carry the baby to term with high ttg iga levels? I have gone gluten-free since the diagnosis but realize it will take some time for my levels to drop. Do I try to conceive this month or hold off? Torn.

 

[kareng]

When not wait 6 months, until you are healthy?  Untreated Celiac is known to cause miscarriages.  Low iron and wonky platelets aren't good for a pregnancy, either.

 

Open Original Shared Link

 

[kareng]

And if you are going glutenfree right now, you may mess up the biopsy results.  You have to be eating gluten to get positive test results.  Witha ttg over 100, there isn't much doubt that you have Celiac, but I would hate for you to have a negative biopsy after eating gluten-free & have some dumb doctor tell you that you do not have  Celiac.

 

[cyclinglady]

I understand your desire to conceive because the clock is ticking!  I had my daughter at 39.  The few years prior I had been ill.  My doctor wisely (he had two children) advised me that I should postpone pregnancy until I was healthier.  It is not just maintaining the pregnancy, but dealing with baby afterwards.   He was so right!   My daughter was healthy and I was able to give 100% to her.  I enjoyed her infancy and toddler years....all the years because I felt well.  

Is there anyway for you to quickly get that gastroenterology appointment?  You do need to be on gluten for the biopsies.  It might be wise to rule out other GI issues that might be occurring as well.  

Finally, learning the gluten-free diet takes time.  Mistakes are always made.  Cross contamination is an issue.  With a toddler in the house, I would recommend the entire household going gluten free, at least while you are pregnant.  Miscarriage does happen with celiac disease, so allowing time to heal and learn the diet to prevent re-activating celiac antibodies are critical.  

I just had one daughter.  I never went on to have another.  She is enough.  She is thriving and socially involved with all her cousins, so she is not missing out on not having a sibling.  Just another thing to think about.  

[Jmg]

8 hours ago, AmyHauchtest said:

Do I try to conceive this month or hold off? Torn.

How important is the diagnosis to you? Could you stay strictly gluten free without a diagnosis? The only treatment for Celiac is the gluten free diet, so you could simply embark on it and either forgo further testing or risk the endoscopy giving a false negative. 

If you can stay honest to the diet then you would always have the option of completing a gluten challenge after you've given birth. I guess the downside to that however is that you may feel far worse then than you would getting testing completed now plus you'd have a baby to look after! If you think you'd be tempted to cheat then you're better off waiting and getting the testing completed now. 

Good luck whatever you decide

Matt

 

[Posterboy]

12 hours ago, AmyHauchtest said:

Met with my hematologist 3 days ago to get blood results relating to high platelet count, low iron and was told I have an extremely high level of ttg iga (128). I was told this is likely the cause of my iron deficiency and high platelets.  Through 3 months of high iron dosage my platelets are normal now but I need to immediately cut out gluten. I have to do an endoscopy to get a small biopsy of my intestine to confirm the blood results but doctor said not not expect any change to the diagnosis.

I am trying to conceive (impatient) as I have a 2.5 year old, had a stillbirth at 27 weeks then a miscarriage at 16 weeks. My fear is if I get pregnant now, I will miscarry due to my ttg iga levels. On the other hand, the miscarriage was caused by a subchroinic hematoma so perhaps unrelated to celiac. I desperately want to get pregnant again and soon. I just turned 37 and feel time is ticking. On the other hand I don't wish to be irresponsible or put myself through more agony.

Anyone get pregnant and carry the baby to term with high ttg iga levels? I have gone gluten-free since the diagnosis but realize it will take some time for my levels to drop. Do I try to conceive this month or hold off? Torn.

 

Amyhauchtest,

This thread might be of help to you.  It is about someone who is trying to conceive like yourself.

https://www.celiac.com/forums/topic/111443-success-stories-needed-desperately/

good luck!

posterboy by the grace of God,

[AmyHauchtest]

Thanks for all your feedback people! I am new to this diagnosis and your input is much appreciated.

My endoscopy/biopsy is next week so I doubt my week+ of gluten free living will do much to alter the results. I've adopted gluten free living with the support of my husband (whose going gluten-free in solidarity) and have not been feeling any side effects. Thing is I never had side effects while eating gluten, it took blood results (showing chronic iron deficiency) and low platelets, coupled with a stillbirth to trigger the hospital to take blood tests to check out my Anti-ttg iga levels. Because they were through the roof, I was told to stop all gluten intake immediately. 

Turning to the question of whether to try to conceive - I guess I'm wondering if I can simultaneously go gluten free and attempt to get pregnant safely. I understand there isn't a lot of literature on the topic but would be interested to hear if anyone out there has done it successfully or knows someone who did. I very much want a bigger family, having a stillbirth then a miscarriage has not dissuaded me. In many respects I'm relieved to have a celiac disease diagnosis so I can at least address the problem. My motivation to live gluten free is high, I just wonder if waiting a matter of months to conceive will improve my chances of carrying a baby to term.

By the way, what anti-ttg iga level is considered normal? My doctor said at 128 Im "extremely celiac". Does this make sense? If so, why do I have no symptoms other that iron/platelet issues? I've read about horrific side effects of people eating gluten but I could go for pizza/beer and not feel a thing. Just curious.

Thanks for all your feedback, it's really encouraging to hear from others out there.

[Gluten-free-01]

47 minutes ago, AmyHauchtest said:

Turning to the question of whether to try to conceive - I guess I'm wondering if I can simultaneously go gluten free and attempt to get pregnant safely. I understand there isn't a lot of literature on the topic but would be interested to hear if anyone out there has done it successfully or knows someone who did. I very much want a bigger family, having a stillbirth then a miscarriage has not dissuaded me. In many respects I'm relieved to have a celiac disease diagnosis so I can at least address the problem. My motivation to live gluten free is high, I just wonder if waiting a matter of months to conceive will improve my chances of carrying a baby to term.

Amy, have you had your thyroid checked? Good thyroid function is also necessary..

[squirmingitch]

Amy, a week + of gluten free living CAN affect your endoscopy!!!!! You can believe us & medical literature/studies or you can go down the rabbit hole so many before you have done & end up with false negatives. Sorry but you NEED to know the truth. It's your decision.

As far as no symptoms go, you may not get GI symptoms after eating gluten but you still get villi damage. There is such a thing as "silent celiac" where the person has no symptoms. Also, over 50% of dx'd celiacs presented without GI symptoms. There are hundreds of non GI symptoms of celiac. Everyone seems to think it's only affecting their GI system but that's not true. What affects the GI tract, affects every single cell in your body. Further, you may find that once you go permanently gluten-free, that things you didn't think were symptoms or never paid attention to, just thinking they were normal - suddenly disappear.

I wish you all the very best & rapid healing!

[kareng]

2 hours ago, AmyHauchtest said:

Thanks for all your feedback people! I am new to this diagnosis and your input is much appreciated.

My endoscopy/biopsy is next week so I doubt my week+ of gluten free living will do much to alter the results. I've adopted gluten free living with the support of my husband (whose going gluten-free in solidarity) and have not been feeling any side effects. Thing is I never had side effects while eating gluten, it took blood results (showing chronic iron deficiency) and low platelets, coupled with a stillbirth to trigger the hospital to take blood tests to check out my Anti-ttg iga levels. Because they were through the roof, I was told to stop all gluten intake immediately. 

Turning to the question of whether to try to conceive - I guess I'm wondering if I can simultaneously go gluten free and attempt to get pregnant safely. I understand there isn't a lot of literature on the topic but would be interested to hear if anyone out there has done it successfully or knows someone who did. I very much want a bigger family, having a stillbirth then a miscarriage has not dissuaded me. In many respects I'm relieved to have a celiac disease diagnosis so I can at least address the problem. My motivation to live gluten free is high, I just wonder if waiting a matter of months to conceive will improve my chances of carrying a baby to term.

By the way, what anti-ttg iga level is considered normal? My doctor said at 128 Im "extremely celiac". Does this make sense? If so, why do I have no symptoms other that iron/platelet issues? I've read about horrific side effects of people eating gluten but I could go for pizza/beer and not feel a thing. Just curious.

Thanks for all your feedback, it's really encouraging to hear from others out there.

The test you had done will have the normal range on it.  It's something like 8 or 10. 

 

 You have some particularly dangerous side effects of Celiac.... not sure why you would want to down play them?  Have you talked to your OB?  I bet she  wouldn't want you to get pregnant for a few  months until you have the platelets back to

This is from a reliable source about pregnancy and active Celiac -

.Open Original Shared Link

 

[pschwab]

I don't know much about how celiac relates to pregnancy personally, but I've heard stories. I can address a couple other things though. Normal range for the test we had was 20 or below. My son's antibody levels started at 300, dropped to 71 in 6 months, then dropped to 26 a year after diagnosis. So within a year, he has gotten very close to "normal range". I know he showed immense improvements within two weeks-a month of being gluten free. His mental clarity, gi issues, temperament, etc all improved. I'm sure everyone is different, but the body is amazing and can heal very quickly for some people. I second the suggestion to talk to your ob. Maybe (depending on your insurance/financial situation, etc) you could get more frequent antibody checks to see how your body is reacting to going gluten free? That could be a tool to help with deciding on getting pregnant. I totally sympathize with the desire to expand your family, and no matter what others say age of the mother always plays into pregnancy and birth. It makes waiting so hard. There is a newscaster from Wisconsin named Dani Maxwell who had difficulty conceiving/carrying babies to term. Through the process, she discovered she had celiac. She is now 39ish weeks with a healthy baby after going gluten free. Maybe you could reach out to her on Facebook or other social media for her story and experience. Best of luck!!!

[cyclinglady]

I had iron deficiency anemia when I was diagnosed.  I had no other noticeable symptoms when I was diagnosed.  Just had  a routine colonoscopy for a cancer screening due to my age.  During my GI consult, he ran a celiac blood panel.  

So, you can be symptom free and still have celiac disease.  It can cause damage that is not visible.  Two months after my diagnosis, I fractured vertebrae in my back doing NOTHING!  I am an athlete and should have had good bones based on all the resistance training I did.  

Take a few months and try to heal before getting pregnant.  Once you develop an autoimmune disorder (celiac disease) others can crop up, particularly under stress.  This would include Type 1 diabetes and thyroiditis (untreated has high risk of miscarriage).  There a very few studies about celiac patients and pregnancy.  What if you are not absorbing folic acid from your vitamins and food?  Are your ready to deal with a baby with spinal bifida?  

Discuss this with your OB and GI.  Learn more about celiac disease so that you can make an INFORMED decision.  

[Posterboy]

On 8/27/2017 at 8:35 AM, AmyHauchtest said:

Met with my hematologist 3 days ago to get blood results relating to high platelet count, low iron and was told I have an extremely high level of ttg iga (128). I was told this is likely the cause of my iron deficiency and high platelets.  Through 3 months of high iron dosage my platelets are normal now but I need to immediately cut out gluten. I have to do an endoscopy to get a small biopsy of my intestine to confirm the blood results but doctor said not not expect any change to the diagnosis.

I am trying to conceive (impatient) as I have a 2.5 year old, had a stillbirth at 27 weeks then a miscarriage at 16 weeks. My fear is if I get pregnant now, I will miscarry due to my ttg iga levels. On the other hand, the miscarriage was caused by a subchroinic hematoma so perhaps unrelated to celiac. I desperately want to get pregnant again and soon. I just turned 37 and feel time is ticking. On the other hand I don't wish to be irresponsible or put myself through more agony.

Anyone get pregnant and carry the baby to term with high ttg iga levels? I have gone gluten-free since the diagnosis but realize it will take some time for my levels to drop. Do I try to conceive this month or hold off? Torn.

 

Amyhauchtest,

Have you thought about/researched whether you might have low stomach acid.

Iron is known to be a tough nutrient to absorb.

here is a link about how low levels  of gastric stomach acid can lead to low iron levels.

Open Original Shared Link

they note quoting

" .  . . . (iron) absorption falls only when (stomach) acid secretion is markedly reduced . . . "

it would seem to me that your stomach acid is not strong enough to absorb iron.

you might also try taking some Beta Carotene.

the journal of nutrition notes B-Carotene can help improve non-heme iron absorption see link below

Open Original Shared Link

they were surprised by these findings and this fact is often over looked today.

they note quoting

"Solubility tests demonstrated that vitamin A and β-carotene are capable of solubilizing iron at pH 6. It seems that β-carotene is more efficient that vitamin A at least for ferrous fumarate. This is may be due to a greater stability of β-carotene to storage, handling and pH changes."

Beta carotene can increase iron absorption at much higher pH levels than normally would be required for iron absorption.

As high as pH with a pH of 6 (stomach acid levels)  where normally  in healthy individuals with higher levels of stomach acid of a pH of < 4 or less is needed for iron absorption to occur.

low stomach acid brought on by stress  or PPI's supplementation can also lead to many other vitamin deficiencies.

Open Original Shared Link

Open Original Shared Link (low magnesium levels)

I hope this is helpful.

*****this is not medical advice.  I only know that when I improved my stomach acid levels my absorption levels improved.  I was low in Zinc, Magnesium etc, and now  are no longer are low in these nutrition's 1) because I supplemented with them and 2) I now absorb them better.

2 Timothy 2: 7 “Consider what I say; and the Lord give thee understanding in all things” this included.

posterboy by the grace of God,

[kareng]

12 hours ago, Posterboy said:

Amyhauchtest,

Have you thought about/researched whether you might have low stomach acid.

Iron is known to be a tough nutrient to absorb.

here is a link about how low levels  of gastric stomach acid can lead to low iron levels.

Open Original Shared Link

they note quoting

" .  . . . (iron) absorption falls only when (stomach) acid secretion is markedly reduced . . . "

it would seem to me that your stomach acid is not strong enough to absorb iron.

you might also try taking some Beta Carotene.

the journal of nutrition notes B-Carotene can help improve non-heme iron absorption see link below

Open Original Shared Link

they were surprised by these findings and this fact is often over looked today.

they note quoting

"Solubility tests demonstrated that vitamin A and β-carotene are capable of solubilizing iron at pH 6. It seems that β-carotene is more efficient that vitamin A at least for ferrous fumarate. This is may be due to a greater stability of β-carotene to storage, handling and pH changes."

Beta carotene can increase iron absorption at much higher pH levels than normally would be required for iron absorption.

As high as pH with a pH of 6 (stomach acid levels)  where normally  in healthy individuals with higher levels of stomach acid of a pH of < 4 or less is needed for iron absorption to occur.

low stomach acid brought on by stress  or PPI's supplementation can also lead to many other vitamin deficiencies.

Open Original Shared Link

Open Original Shared Link (low magnesium levels)

I hope this is helpful.

*****this is not medical advice.  I only know that when I improved my stomach acid levels my absorption levels improved.  I was low in Zinc, Magnesium etc, and now  are no longer are low in these nutrition's 1) because I supplemented with them and 2) I now absorb them better.

2 Timothy 2: 7 “Consider what I say; and the Lord give thee understanding in all things” this included.

posterboy by the grace of God,

Really?  Low stomach acid?  She is just diagnosed Celiac, which is a cause of low iron.  Why not let her heal from the Celiac and see what that doesn't for her levels?  Why look for stuff beyond the obvious? 

[Posterboy]

20 hours ago, kareng said:

Really?  Low stomach acid?  She is just diagnosed Celiac, which is a cause of low iron.  Why not let her heal from the Celiac and see what that doesn't for her levels?  Why look for stuff beyond the obvious? 

kareng,

I probably jumped a step.

I might should of suggested she ask her doctor to check for H. Plyori infection.

but the connection between low stomach acid (long term use of PPI's) and low iron levels have been established.

here  is link establishing many minerals and vitamin b-12 low levels with use of medicine reducing stomach acid levels thus limiting the body' ability to absorb them.

Open Original Shared Link

quoting from iron absorption paragraph

"Numerous animal, as well as human support the conclusion that the absorption of iron is affected by gastric acidity [Open Original Shared Link,Open Original Shared Link,Open Original Shared Link,Open Original Shared Link]. Dietary iron is present in food as either non-heme (66%) or heme iron(32%), and the non-heme iron’ s absorption is markedly improved by gastric acid . . .. Numerous clinical conditions associated with achlorhydria/hypochlorhydria[atrophic gastritis, pernicious anemia, gastric resections, vagotomy] have been shown to be associated with decreased iron absorption and/or iron-deficiency anemia."

This is usually preceded by a H.Pylori infection (ulcer etc.) or Iron deficiency Anemia (IDA) when H. Pyori has not established as the cause of the low stomach acid.

Either way low stomach acid plays a role in Iron absorption and the resulting IDA that develops because the body no longer can absorb it adequately.

they even note this fact in their research of H. Pylori

see link below entitled "Helicobacter pylori infection as a cause of iron deficiency anaemia of unknown origin"

Open Original Shared Link

I get it celiac is well established as and associated cause of IDA. . .. but so is low stomach acid brought on by H.Pylori  . .. so I jumped to the low stomach acid conclusion (hypothesis).

The use  of PPI's or (Low stomach acid in my mind) has been linked to a trigger for Celiac disease.

So I follow the bread crumbs if you will.

if h.pylori can cause low stomach acid which can cause Iron deficiency anemia then it might can explain some of the same symptom's that a celiac develops.

until you address the one -- the other will be untreated and effect your control of the other.

A two front war breaks outs! and you don't know  if  IDA is caused by the celiac disease or the low stomach acid which can mimic many of the same symptom's.

How do we know this --- we treat the low stomach acid with betaineHCL to see if it improves digestion.

If it doesn't improve the IDA of an unknown cause then celiac is the cause.

But you can't do what you don't know.  If you don't know to look for low stomach acid as a "possible" cause then you can't research it more.

we all participate on this forum to help others.  I only know it helped me.  so I  share my experience.

Some times our experiences are the same sometimes they are not.

my experience with Magnesium is the same as Ennis_Tx.  My experience with Vitamin D is the same as Knitty Kitty's.

My experience with low stomach acid is not the same as Ennis_tx experience with taking BetaineHCL.

But you can't do you what you don't know.

celiac.org wrote about the connection between PPI's (low stomach acid) and celiac disease.

Open Original Shared Link

celiac.com reported on the same research.

https://www.celiac.com/articles/23432/1/Do-Proton-Pump-Inhibitors-Increase-Risk-of-Celiac-Disease/Page1.html

where the researchers concluded quoting

"The data clearly show that patients who use anti-secretory medications are at much greater risk for developing celiac disease following the use of these medicines.

The fact that this connection persisted even after the team excluded prescriptions for anti-secretory medicines in the year preceding the celiac disease diagnosis suggests a causal relationship."

but we read over this word "The fact that this connection persisted . . . for anti-secretory medicines (Low Stomach acid) in the year preceding the celiac disease diagnosis suggests a causal relationship."

so if low stomach acid can cause celiac disease and IDA is caused by celiac disease. 

I conclude that Iron Deficient Anemia can be caused by low stomach acid.

this would of probably been a better link to establish h. pylori's casual relationship to Iron deficiency Anemia entitle "Helicobacter pylori-associated hypochlorhydria in children, and development of iron deficiency."

Open Original Shared Link

and I said knitty kitty was better at this than me . .  I always seem to stumble when I cite works.

but the link provided showed how low stomach acid can led to s/low iron levels.

And I am sorry Amy that we/I have taken over your thread.  I can't seem to write a short response.

But I hope this is helpful to the next reader. 

I understand anyone's knee jerk reaction upon first hearing  a different opinion.

But I am of  the opinion that treating my low stomach acid helped most of my absorption issues.

I have summarized my experience here in my posterboy blog post about the subject of low stomach acid being misdiagnosed.

https://www.celiac.com/gluten-free/blogs/entry/2106-is-ncgs-andor-celiac-disease-really-low-stomach-acid-misdiagnosed/

it should be noted that many of the same symptom's  such as Iron deficiency anemia and NCGS and/or Celiac disease could be considered an associated condition of some one with low stomach acid.

And I am sorry I jumped over the H.Pylori as a cause of Iron deficiency anemia.

Amy have your doctor check you for H.Pylori as a possible co-morbid condition of your celiac diagnosis.

SIBO is also common for people who have recently received a celiac diagnosis.

I just know I got better using this method. **** this is not medical advice but I hope it helps someone else or whoever want's to research it more.

That's all I suggest is research it some more.  It is not as far fetched as it seems if H.Pylori and IDA and low stomach acid is (a) linked/associated condition.

2 Timothy 2:7 Consider what I say; and the Lord give thee understanding in all things.

Posterboy by the Grace of God,