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Success Stories Needed Desperately!


ssb85

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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


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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,

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    • trents
      @BlessedinBoston, it is possible that in Canada the product in question is formulated differently than in the USA or at least processed in in a facility that precludes cross contamination. I assume from your user name that you are in the USA. And it is also possible that the product meets the FDA requirement of not more than 20ppm of gluten but you are a super sensitive celiac for whom that standard is insufficient. 
    • BlessedinBoston
      No,Lindt is not gluten free no matter what they say on their website. I found out the hard way when I was newly diagnosed in 2000. At that time the Lindt truffles were just becoming popular and were only sold in small specialty shops at the mall. You couldn't buy them in any stores like today and I was obsessed with them 😁. Took me a while to get around to checking them and was heartbroken when I saw they were absolutely not gluten free 😔. Felt the same when I realized Twizzlers weren't either. Took me a while to get my diet on order after being diagnosed. I was diagnosed with small bowel non Hodgkins lymphoma at the same time. So it was a very stressful time to say the least. Hope this helps 😁.
    • knitty kitty
      @Jmartes71, I understand your frustration and anger.  I've been in a similar situation where no doctor took me seriously, accused me of making things up, and eventually sent me home to suffer alone.   My doctors did not recognize nutritional deficiencies.  Doctors are trained in medical learning institutions that are funded by pharmaceutical companies.  They are taught which medications cover up which symptoms.  Doctors are required to take twenty  hours of nutritional education in seven years of medical training.  (They can earn nine hours in Nutrition by taking a three day weekend seminar.)  They are taught nutritional deficiencies are passe' and don't happen in our well fed Western society any more.  In Celiac Disease, the autoimmune response and inflammation affects the absorption of ALL the essential vitamins and minerals.  Correcting nutritional deficiencies caused by malabsorption is essential!  I begged my doctor to check my Vitamin D level, which he did only after making sure my insurance would cover it.  When my Vitamin D came back extremely low, my doctor was very surprised, but refused to test for further nutritional deficiencies because he "couldn't make money prescribing vitamins.". I believe it was beyond his knowledge, so he blamed me for making stuff up, and stormed out of the exam room.  I had studied Nutrition before earning a degree in Microbiology.  I switched because I was curious what vitamins from our food were doing in our bodies.  Vitamins are substances that our bodies cannot manufacture, so we must ingest them every day.  Without them, our bodies cannot manufacture life sustaining enzymes and we sicken and die.   At home alone, I could feel myself dying.  It's an unnerving feeling, to say the least, and, so, with nothing left to lose, I relied in my education in nutrition.  My symptoms of Thiamine deficiency were the worst, so I began taking high dose Thiamine.  I had health improvement within an hour.  It was magical.  I continued taking high dose thiamine with a B Complex, magnesium. and other essential nutrients.  The health improvements continued for months.  High doses of thiamine are required to correct a thiamine deficiency because thiamine affects every cell and mitochondria in our bodies.    A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function.  The cerebellum of the brain is most affected.  The cerebellum controls things we don't have to consciously have to think about, like digestion, balance, breathing, blood pressure, heart rate, hormone regulation, and many more.  Thiamine is absorbed from the digestive tract and sent to the most important organs like the brain and the heart.  This leaves the digestive tract depleted of Thiamine and symptoms of Gastrointestinal Beriberi, a thiamine deficiency localized in the digestive system, begin to appear.  Symptoms of Gastrointestinal Beriberi include anxiety, depression, chronic fatigue, headaches, Gerd, acid reflux, gas, slow stomach emptying, gastroparesis, bloating, diarrhea and/or constipation, incontinence, abdominal pain, IBS,  SIBO, POTS, high blood pressure, heart rate changes like tachycardia, difficulty swallowing, Barrett's Esophagus, peripheral neuropathy, and more. Doctors are only taught about thiamine deficiency in alcoholism and look for the classic triad of symptoms (changes in gait, mental function, and nystagmus) but fail to realize that gastrointestinal symptoms can precede these symptoms by months.  All three classic triad of symptoms only appear in fifteen percent of patients, with most patients being diagnosed with thiamine deficiency post mortem.  I had all three but swore I didn't drink, so I was dismissed as "crazy" and sent home to die basically.   Yes, I understand how frustrating no answers from doctors can be.  I took OTC Thiamine Hydrochloride, and later thiamine in the forms TTFD (tetrahydrofurfuryl disulfide) and Benfotiamine to correct my thiamine deficiency.  I also took magnesium, needed by thiamine to make those life sustaining enzymes.  Thiamine interacts with each of the other B vitamins, so the other B vitamins must be supplemented as well.  Thiamine is safe and nontoxic even in high doses.   A doctor can administer high dose thiamine by IV along with the other B vitamins.  Again, Thiamine is safe and nontoxic even in high doses.  Thiamine should be given if only to rule Gastrointestinal Beriberi out as a cause of your symptoms.  If no improvement, no harm is done. Share the following link with your doctors.  Section Three is especially informative.  They need to be expand their knowledge about Thiamine and nutrition in Celiac Disease.  Ask for an Erythrocyte Transketolace Activity test for thiamine deficiency.  This test is more reliable than a blood test. Thiamine, gastrointestinal beriberi and acetylcholine signaling.  https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Best wishes!
    • Jmartes71
      I have been diagnosed with celiac in 1994, in remission not eating wheat and other foods not to consume  my household eats wheat.I have diagnosed sibo, hernia ibs, high blood pressure, menopause, chronic fatigue just to name a few oh yes and Barrett's esophagus which i forgot, I currently have bumps in back of my throat, one Dr stated we all have bumps in the back of our throat.Im in pain.Standford specialist really dismissed me and now im really in limbo and trying to get properly cared for.I found a new gi and new pcp but its still a mess and medical is making it look like im a disability chaser when Im actively not well I look and feel horrible and its adding anxiety and depression more so.Im angery my condition is affecting me and its being down played 
    • marion wheaton
      Wondering if anyone knows whether Lindt chocolate balls are gluten free. The Lindt Canadian website says yes but the Lindt USA website says no. The information is a bit confusing.
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