Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.


  • Celiac.com Sponsor (A1):
    Celiac.com Sponsor (A1-M):
  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Success Stories Needed Desperately!


ssb85

Recommended Posts

ssb85 Newbie

I've had coeliac disease for 5 years now.  I'm 100% gluten free apart from the occasional accidental poisioning I sometimes get at restuarants.

 

I've had two chemical pregnancies so far, 1 unplanned in 2014 and one planned this past month.  My husband and I are trying to conceive.  I can get pregnant anytime I try, but within 1-2 weeks they disappear. 

 

I'm seeing a specialist next week who reckons the auto-immune disease is forcing my body to kill of anything new that enters it... hence the recurrent failed pregnancies.  I'm getting tests to confirm his suspicions, but he said there s treatment like a concoction of aspirin/heparin and IVGi's etc etc.  I already take prescribed folic and prenatal vitamins etc.

 

My question is... has anybody experienced this and have gone on to have successful pregnancies with or without the help of this medication?

 

As I've only started trying for real, I'm very anxious that this journey is going to be one of heartache, so please share any success stories if you can! 

thank you in advanced

 

Louise

xx


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



notme Experienced

my celiac gene must have turned 'on' when i was (or soon after) pregnant with my first baby.  of course, i didn't know i had it.  i had a miscarriage very early on (very wierd, because baby's cells kept multiplying, just not enough (?) )  anyway, i had to have a d&c with that one and doctors said i might have problems with any subsequent pregnancies.  but, nope, my second baby was a normal pregnancy and birth, with absolutely no complications.  :)  

 

good luck & welcome to the forum.  ((((hugs)))) 

  • 2 years later...
Lyss Newbie

You have to be completely grain-free if you have celiac/hypothyroidism/hashimotos. I was pregnant with these "diseases" a year ago and completely cured it by going grain-free. I now have a healthy 10 month old who is perfect and reaching all of his milestones. It's possible. Hang in there!

cyclinglady Grand Master
18 minutes ago, Lyss said:

You have to be completely grain-free if you have celiac/hypothyroidism/hashimotos. I was pregnant with these "diseases" a year ago and completely cured it by going grain-free. I now have a healthy 10 month old who is perfect and reaching all of his milestones. It's possible. Hang in there!

Welcome to the forum.  I assume that you mean that you are controlling your Hashimoto's and celiac disease with a gluten free and/or grain free diet.  There is no cure for any autoimmune disease.  Decreased antibodies indicates that the disease is not active, but not cured.  

Congrats on having a healthy baby!  Enjoy him.  

Lyss Newbie
1 minute ago, cyclinglady said:

Welcome to the forum.  I assume that you mean that you are controlling your Hashimoto's and celiac disease with a gluten free and/or grain free diet.  There is no cure for any autoimmune disease.  Decreased antibodies indicates that the disease is not active, but not cured.  

Congrats on having a healthy baby!  Enjoy him.  

Thank you! What I really mean to say is that the way our food is sprayed, processed, and prepared wreaks havoc  on our bodies and thyroids. I don't believe it's a disease but our diseased food that's making us sick (some people are more vulnerable to it for various reasons). I no longer have antibodies and my thyroid numbers are normal range. So yes, it is managed.

Posterboy Mentor

ssb85 desperately needed success stories, (don't we all)

I realize the OP may not be following this thread now but in the hope it might help others that read this thread that ssb5 or other pregnant ladies or those looking to get pregnant might want to have their thyroids checked.

a  poor performing thyroid can lead to a miscarriage.  I had a friend who's sister this  happened too!

Obviously they were devastated.

Here is an online article from the verywell website that talks about the association of thyroid problems and recurrent miscarriages.

Open Original Shared Link

Also their is new research/study this week out of Australia  that links low Vitamin B3 levels and supplementation that might can help some pregnant mothers possibly prevent miscarriages.

Open Original Shared Link

It is really groundbreaking research akin to when they learned Folic Acid helps reduce neural tube defects ie, (spina bidia) and rates dropped 30+ percent in the year after fortification become mandatory in the US.

Open Original Shared Link

quoting from the article

Open Original Shared Link

"Vitamin B3 -- found in meat and green vegetables -- has been shown to prevent one genetic cause of birth defects and miscarriages, according to a new study. . .


"Not only have we identified a cause of miscarriage, and of birth defects where the babies affected have heart and vertebral and kidney defects among others, but we've also discovered a prevention in the form of niacin, also known as vitamin B3," said Sally Dunwoodie, lead author of the study and a researcher at Sydney's Victor Chang Cardiac Research Institute.

Based on the findings, Dunwoodie suggests that pregnant women should take high doses of vitamin B3, also known as niacin, to prevent miscarriages and certain types of birth defects. . . .

Dunwoodie and her colleagues based their research on a New Jersey Medical School study that found at least a third of pregnant women have low levels of vitamin B3 during the first trimester, when a baby's organ development begins. The research also discovered that vitamin B3 levels were low in 60% of women by the third trimester."

It is me again.  As always consult your doctor before using or taking high doses of anything (Vitamin or otherwise) when pregnant.

But since  it is already know B-Vitamins help Celiac's.

research indicating select B-Vitamins like b-6, folic acid and b-12 helps celiac's to control their homocysteine levels a marker of heart stress/inflammation.

Open Original Shared Link

I can personally vouch for how folic acid helps my blood pressure.

it would stand to reason adding Vitamin B-3 to your regimen in say the way of B-Complex might help too!

And why most prenatal's already have B-vitamins in them they are in a much lower amount than studied in this research. And you might not need the higher doses studied but like in the results for folic acid (spina bifida) maybe a smaller more frequent amount might do as well.  Don't most people eat 3 times/daily.

B-Vitamins due to  their water soluble nature should be taken with each meal or twice a day for best effect.  And they note in their research the latter in the pregnancy the lower one becomes in Vitamin B-3 reflecting an increased need in pregnancy indicating that only taking B-Vitamins (prenatal's) once a day might not be frequent enough to help with a deficiency when pregnant.

This presumable is in person's already taking a prenatal and yet their deficient status increased with time and the stress of pregnancy.

We all know the adage "eating for two" it is an adage "cliche" because their is truth in it.

***this is not medical advice but it seems to be promising  and timely research for those looking to conceive and might still be having trouble doing so.

I hope it helps the next reader of this post.

the more you know . . . the better prepared you are.

good luck on your continued journey.

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,

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Jane02 replied to HectorConvector's topic in Related Issues & Disorders
      314

      Terrible Neurological Symptoms

    2. - Jane02 replied to HectorConvector's topic in Related Issues & Disorders
      314

      Terrible Neurological Symptoms

    3. - knitty kitty replied to HectorConvector's topic in Related Issues & Disorders
      314

      Terrible Neurological Symptoms

    4. - trents commented on Amiah's blog entry in Amiah
      1

      Help!!

    5. - Scott Adams replied to HectorConvector's topic in Related Issues & Disorders
      314

      Terrible Neurological Symptoms

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,581
    • Most Online (within 30 mins)
      7,748

    MaggieSc
    Newest Member
    MaggieSc
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • Jane02
      Sorry, I just realized how old this thread is and only read the initial post from 2021. I'll have to catch up on the comments in this thread. 
    • Jane02
      Sorry to hear you're going through such a hard time. It would be worth looking into MCAS/histamine issues and also Long Covid. Perhaps there is something occurring in addition to celiac disease. It would be worth ruling out micronutrient deficiencies such as the b vitamins (B12, folate, B1, etc), vit D, and ferritin (iron stores). 
    • knitty kitty
      This sounds very similar to the neuropathic pain I experienced with type two diabetes.  Gloves and boots pattern of neuropathy is common with deficiencies in Cobalamine B12 (especially the pain in the big toe), Niacin B3, and Pyridoxine B6.  These are vitamins frequently found to be low in people with pre-diabetes and diabetes.  Remember that blood tests for vitamin levels is terribly inaccurate.  You can have vitamin deficiencies before there are any changes in blood levels.  You can have "normal" serum levels, but be deficient inside organs and tissues where the vitamins are actually utilized.  The blood is a transportation system, moving vitamins absorbed in the intestines to organs and tissues.  Just because there's trucks on the highway doesn't mean that the warehouses are full.  The body will drain organs and tissues of their stored vitamins and send them via the bloodstream to important organs like the brain and heart.  Meanwhile, the organs and tissues are depleted and function less well.   Eating a diet high in simple carbohydrates can spike blood sugar after meals.  Eating a diet high in carbohydrates consistently over time can cause worsening of symptoms.  Thiamine and other B vitamins like Niacin B3 and Pyridoxine B6, (which I noticed you are not supplementing), are needed to turn carbs, proteins and fats into energy for the body to use.  Alcohol consumption can lower blood sugar levels, and hence, alleviate the neuropathic pain.  Alcohol destroys many B vitamins, especially Pyridoxine, Thiamine and Niacin.  With alcohol consumption, blood glucose is turned into fat, stored in the liver or abdomen, then burned for fuel, thus lowering blood glucose levels.  With the cessation of alcohol and continued high carb diet, the blood glucose levels rise again over time, resulting in worsening neuropathy.   Heavy exercise can also further delete B vitamins.  Thiamine and Niacin work in balance with each other.  Sort of like a teeter-totter, thiamine is used to produce energy and Niacin is then used to reset the cycle for thiamine one used again to produce energy.  If there's no Niacin, then the energy production cycle can't reset.  Niacin is important in regulating electrolytes for nerve impulse conduction.  Electrolyte imbalance can cause neuropathic pain.   Talk to your doctors about testing for Type Two diabetes or pre-diabetes beyond an A1C test since alcohol consumption can lower A1C giving inaccurate results. Talk to your doctors about supplementing with ALL eight B vitamins, and correcting deficiencies in Pyridoxine, Niacin, and B12.  Hope this helps! Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ P. S.  Get checked for Vitamin C deficiency, aka Scurvy.  People with Diabetes and those who consume alcohol are often low in Vitamin C which can contribute to peripheral neuropathy.
    • Scott Adams
      I’m really sorry you’re dealing with this—chronic neuropathic or nociplastic pain can be incredibly frustrating, especially when testing shows no nerve damage. It’s important to clarify for readers that this type of central sensitization pain is not the same thing as ongoing gluten exposure, particularly when labs, biopsy, and nutritional status are normal. A stocking/glove pattern with normal nerve density points toward a pain-processing disorder rather than active celiac-related injury. Alcohol temporarily dampening symptoms likely reflects its central nervous system depressant effects, not treatment of an underlying gluten issue—and high-dose alcohol is dangerous and not a safe or sustainable strategy. Seeing a pain specialist is absolutely the right next step, and we encourage members to work closely with neurology and pain management rather than assuming hidden gluten exposure when objective testing does not support it.
    • Scott Adams
      There is no credible scientific evidence that standard water filters contain gluten or pose a gluten exposure risk. Gluten is a food protein from wheat, barley, or rye—it is not used in activated carbon filtration in any meaningful way, and refrigerator or pitcher filters are not designed with food-based binders that would leach gluten into water. AI-generated search summaries are not authoritative sources, and they often speculate without documentation. Major manufacturers design filters for water purification, not food processing, and gluten contamination from a water filter would be extraordinarily unlikely. For people with celiac disease, properly functioning municipal, bottled, filtered, or distilled water is considered gluten-free.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.