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Post-partum Celiac?

ut96grad

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ut96grad Newbie
ut96grad
Posted

New here. Hello everyone.

I have lots of questions.

First one is - has anyone on this board had pregnancy "bring out" Celiac?

I am 13 months post-partum (baby was born by c-section) and have LOTS of Celiac symptoms.

TIA.

Sheri in TX

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Ursa Major Collaborator
Ursa Major
Posted

Hi Sheri, and welcome to these forums. Yes, unfortunately it is not uncommon for pregnancy to trigger the celiac disease genes and to bring out celiac disease in people. Quite a few members had that happen. I am sure those women (who are most likely sleeping right now, of course) will chime in soon.

ItchyMeredith Contributor
ItchyMeredith
Posted

ME!

I had no celiac symptoms till I was 2 months postpartum with my first child. Suddenly I had DH something terrible. It lasted for many months but mostly subsided- even on gluten. I had another outbreak when I was 2 months postpartum with my second son. This is when we figured out that it was celiac.

There is something about postpartum or maybe breastfeeding hormones that exaggerate my DH. Pretty Crazy!

missy'smom Collaborator
missy'smom
Posted

Pregnancy/childbirth was the trigger for me as well and unfortunately it took the next 8 years to find out that it was celiac disease. I tried to tell my doctors that something wasn't right(I didn't know about celiac disease at the time)but just got dismissed and even laughed at when I suggested to one that something wasn't right with my immune system. My intuition proved to be right in the end. I wish that it had been caught earlier. The lesson I learned from that is ...Advocate for yourself. Don't just accept your symptoms and keep pressing for answers until you get them. And don't say "it's only stress, part of being a new mom etc." "If only I..got more exercize, changed my diet etc."

lizard00 Enthusiast
lizard00
Posted

I'm pretty sure it was my trigger, too. I could pretty much eat whatever garbage I wanted to and be fine. After my son was born, slowly my body turned on me. He was 2 1/2 by the time I discovered what was going on.

I did get a lot of, "well, you are the mother of a toddler, you're supposed to be tired... " So double that from the PP... don't accept that as an answer. If I had of, I would still be sleeping my life away and while my head continued to throb.

fedora Enthusiast
fedora
Posted

me, my twin pregnany

I think I had celiac bad from9 to 13 years old. Then I went into the teenage remission thing. I still had some symptoms, but was not afraid I was dying anymore(for real I thought I might be dying). After I went off wheat at 19 for awhile, I got more healthy. I had one child at 22, then at 25 had twins. My rashes on my hands began during my pregnancy. When they turned two I was a wreck. Anxiety attacks, rashes all over both hands, my "spells" started, chronic constipation followed by horrible attacks of going to the bathroom, and almost fainted at times. I couldn't do anything at all for weeks I was so out of it. yuck. I had gone off wheat again and started to get better, but had also taken a herbal hormone balancer. I had been pregnant with twins, went overdue, and nursed them till they were two!!!! my poor body was shot. I assumed my hormones were shot and needed rebalancing. My doctor even suggested celiac but because I was feeling better(duh I had gone off wheat) and did not have chronic constipation he doubted it. I had never heard of celiac or gluten in other foods before. Truthfully I was in denial for years about gluten, no ones fault but my own there.

jerseyangel Proficient
jerseyangel
Posted

I believe (as does the doctor who diagnosed me) that my C-section at age 29 was what triggered my Celiac. The sad thing is that I wasn't diagnosed until I was 49.

I had symptoms since childhood, actually, but felt better in my teens and early 20's (which I later found out it not uncommon).

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Mickide Apprentice
Mickide
Posted
New here. Hello everyone.

I have lots of questions.

First one is - has anyone on this board had pregnancy "bring out" Celiac?

I am 13 months post-partum (baby was born by c-section) and have LOTS of Celiac symptoms.

TIA.

Sheri in TX

I found out I had Celiac when my DD was 11 months old!

pixiegirl Enthusiast
pixiegirl
Posted

I started getting symptoms right after child birth but was not diagnosed until my daughter was 11 years old!

Susan

slmprofesseur Apprentice
slmprofesseur
Posted

I don't have a definitive diagnosis, but I have had symptoms for years. My symptoms progressively got worse and the low point was my 2nd pregnancy. I had heartburn so bad it caused asthma flare ups. I didn't find out what celiac disease was until my son was diagnosed with a wheat allergy. I think that was part of the problem with his premature birth. At 26 wks I was diagnosed with intrauterine growth retardation. In spite of a healthy diet, I was not growing. He was born via emergency c-section at 33 wks. At 8 months old and in the 5th percentile for growth, he was tested positive for a wheat allergy. We went gluten free last year and my heartburn and asthma have all improved.

No one will test us because the "research" shows that there is a low incidence of celiac disease among African-Americans.

WendyG Explorer
WendyG
Posted

Me too. I had a very difficult pregnancy and birth with my third child... My Harry was totally worth every bit even celiac!

My symptoms started while I was still in the hospital. I was very sick and looking back all that sounded good to eat was Gram crackers. I told my ob the next women who has terrible D after delivery and cant stop loosing weight don't tell her to take an anti diarrheal.

Wendy

AJJ Newbie
AJJ
Posted
I believe (as does the doctor who diagnosed me) that my C-section at age 29 was what triggered my Celiac. The sad thing is that I wasn't diagnosed until I was 49.

I had symptoms since childhood, actually, but felt better in my teens and early 20's (which I later found out it not uncommon).

Where do I find out more about going to remission as a teenager? I think that happened to me?

lizard00 Enthusiast
lizard00
Posted
No one will test us because the "research" shows that there is a low incidence of celiac disease among African-Americans.

You know, sometimes I am just ASTOUNDED at the ignorance of doctors. So because there's a low incidence, you MUST not have it. My first GI told me that "in order to have Celiac, you must carry the gene." (Inferring that I didn't carry the gene, although he never thought to test me for it.) Somebody needs to take a book to the side of their heads, maybe would learn something through osmosis. They obviously aren't keeping up on it...

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    • cristiana
      Feel like I’m starting over

      By cristiana · Posted

      Hi @Scatterbrain Thank you for your reply.   Some of these things could be weaknesses, also triggered by stress, which perhaps have come about as the result of long-term deficiencies which can take a long time to correct.   Some could be completely unrelated. If it is of help, I'll tell you some of the things that started in the first year or two, following my diagnosis - I pinned everything on coeliac disease, but it turns out I wasn't always right!  Dizziness, lightheaded - I was eventually diagnosed with cervical dizziness (worth googling, could be your issue too, also if you have neck pain?)  A few months after diagnosis I put my neck out slightly carrying my seven-year-old above my head, and never assigned any relevance to it as the pain at the time was severe but so short-lived that I'd forgotten the connection. Jaw pain - stress. Tinnitus - I think stress, but perhaps exacerbated by iron/vitamin deficiencies. Painful ribs and sacroiliac joints - no idea, bloating made the pain worse. It got really bad but then got better. Irregular heart rate - could be a coincidence but my sister (not a coeliac) and I both developed this temporarily after our second Astra Zeneca covid jabs.   Subsequent Pfizer jabs didn't affect us. Brain fog - a big thing for people with certain autoimmune issues but in my case I think possibly worse when my iron or B12 are low, but I have no proof of this. Insomnia - stress, menopause. So basically, it isn't always gluten.  It might be worth having your vitamins and mineral levels checked, and if you have deficiencies speak to your Dr about how better to address them?    
    • knitty kitty
      My only proof

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      @NanceK, I do have Hypersensitivity Type Four reaction to Sulfa drugs, a sulfa allergy.  Benfotiamine and other forms of Thiamine do not bother me at all.  There's sulfur in all kinds of Thiamine, yet our bodies must have it as an essential nutrient to make life sustaining enzymes.  The sulfur in thiamine is in a ring which does not trigger sulfa allergy like sulfites in a chain found in pharmaceuticals.  Doctors are not given sufficient education in nutrition (nor chemistry in this case).  I studied Nutrition before earning a degree in Microbiology.  I wanted to know what vitamins were doing inside the body.   Thiamine is safe and nontoxic even in high doses.   Not feeling well after starting Benfotiamine is normal.  It's called the "thiamine paradox" and is equivalent to an engine backfiring if it's not been cranked up for a while.  Mine went away in about three days.  I took a B Complex, magnesium and added molybdenum for a few weeks. It's important to add a B Complex with all eight essential B vitamins. Supplementing just one B vitamin can cause lows in some of the others and result in feeling worse, too.  Celiac Disease causes malabsorption of all the B vitamins, not just thiamine.  You need all eight.  Thiamine forms including Benfotiamine interact with each of the other B vitamins in some way.  It's important to add a magnesium glycinate or chelate supplement as well.  Forms of Thiamine including Benfotiamine need magnesium to make those life sustaining enzymes.  (Don't use magnesium oxide.  It's not absorbed well.  It pulls water into the intestines and is used to relieve constipation.)   Molybdenum is a trace mineral that helps the body utilize forms of Thiamine.   Molybdenum supplements are available over the counter.  It's not unusual to be low in molybdenum if low in thiamine.   I do hope you will add the necessary supplements and try Benfotiamine again. Science-y Explanation of Thiamine Paradox: https://hormonesmatter.com/paradoxical-reactions-with-ttfd-the-glutathione-connection/#google_vignette
    • Wheatwacked
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      Your goal is not to be a good puppet, there is no gain in that. You might want to restart the ones that helped.  It sounds more like you are suffering from malnutrition.  Gluten free foods are not fortified with things like Thiamine (B1), vitamin D, Iodine, B1,2,3,5,6 and 12 as non-gluten free products are required to be. There is a Catch-22 here.  Malnutrition can cause SIBO, and SIBO can worsen malnutrition. Another possibility is side effects from any medication that are taking.  I was on Metformin 3 months before it turned me into a zombi.  I had crippling side effects from most of the BP meds tried on me, and Losartan has many of the side effects on me from my pre gluten free days. Because you have been gluten free, you can test and talk until you are blue in the face but all of your tests will be negative.  Without gluten, you will not create the antigen against gluten, no antigens to gluten, so no small intestine damage from the antigens.  You will need to do a gluten challange to test positive if you need an official diagnosis, and even then, no guaranty: 10 g of gluten per day for 6 weeks! Then a full panel of Celiac tests and biopsy. At a minimum consider vitamin D, Liquid Iodine (unless you have dermatitis herpetiformis and iodine exasperates the rash), and Liquid Geritol. Push for vitamin D testing and a consult with a nutritionist experienced with Celiack Disease.  Most blood tests don't indicate nutritional deficiencies.  Your thyroid tests can be perfect, yet not indicate iodine deficiency for example.  Thiamine   test fine, but not pick up on beriberi.  Vegans are often B12 deficient because meat, fish, poultry, eggs, and dairy are the primary souces of B12. Here is what I take daily.  10,000 IU vitamin D3 750 mg g a b a [   ] 200 mg CoQ10 [   ] 100 mg DHEA [   ] 250 mg thiamine B1 [   ] 100 mg of B2 [   ] 500 mg B5 pantothenic acid [   ] 100 mg B6 [   ] 1000 micrograms B12 n [   ] 500 mg vitamin c [   ] 500 mg taurine [   ] 200 mg selenium   
    • NanceK
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      By NanceK · Posted

      Hi…Just a note that if you have an allergy to sulfa it’s best not to take Benfotiamine. I bought a bottle and tried one without looking into it first and didn’t feel well.  I checked with my pharmacist and he said not to take it with a known sulfa allergy. I was really bummed because I thought it would help my energy level, but I was thankful I was given this info before taking more of it. 
    • Wheatwacked
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      Hello @Scatterbrain, Are you getting enough vitamins and minerals.  Gluten free food is not fortified so you may be starting to run low on B vitamins and vitamin D.   By the way you should get your mom checked for celiac disease.  You got it from your mom or dad.  Some studies show that following a gluten-free diet can stabilize or improve symptoms of dementia.  I know that for the 63 years I was eating gluten I got dumber and dumber until I started GFD and vitamin replenishment and it began to reverse.  Thiamine can get used up in a week or two.  Symptoms can come and go with daily diet.  Symptoms of beriberi due to Thiamine deficiency.   Difficulty walking. Loss of feeling (sensation) in hands and feet. Loss of muscle function or paralysis of the lower legs. Mental confusion. Pain. Speech difficulties. Strange eye movements (nystagmus) Tingling. Any change in medications? Last March I had corotid artery surgery (90 % blockage), and I started taking Losartan for blood pressure, added to the Clonidine I was taking already.  I was not recovering well and many of my pre gluten free symptoms were back  I was getting worse.  At first I thought it was caused a reaction to the anesthesia from the surgery, but that should have improved after two weeks.  Doctor thought I was just being a wimp. After three months I talked to my doctor about a break from the Losartan to see if it was causing it. It had not made any difference in my bp.  Except for clonindine, all of the previous bp meds tried had not worked to lower bp and had crippling side effects. One, I could not stand up straight; one wobbly knees, another spayed feet.  Inguinal hernia from the Lisinopril cough.  Had I contiued on those, I was destined for a wheelchair or walker. She said the symptoms were not from Losartan so I continued taking it.  Two weeks later I did not have the strength in hips and thighs to get up from sitting on the floor (Help, I can't get up😨).  I stopped AMA (not recommended).  Without the Losartan, a) bp did not change, after the 72 hour withdrawal from Losartanon, on clonidine only and b) symptoms started going away.  Improvement started in 72 hours.  After six weeks they were gone and I am getting better.  
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