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Females....only.


CeliacAlli

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CeliacAlli Apprentice

Has anyone who is a celiac or has a kid that went through puberty and had these issues with not having menstruation start at the expected age...by the looks of things I def. should have started by now? My doc is like avoiding it totally and mom isn't really sure about anything...don't think she really knows what to think. What to do?

btw..I am nearly 14 mom started 10 ish aunt started at 8


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ShayFL Enthusiast

Menstruation has a lot to do with body fat. Are you underweight due to the Celiac?

8 is way too young. The average age is 12 which means anywhere from 10 to 14 would be considered normal by US standards. So I would not worry into your 14th birthday.

Are you developing otherwise? Breast buds? Body hair? If you are then it may just take a little patience.

You say you are Celiac so I hope you are on a 100% gluten-free diet. This is what your body needs to develop properly.

CeliacAlli Apprentice
Menstruation has a lot to do with body fat. Are you underweight due to the Celiac?

8 is way too young. The average age is 12 which means anywhere from 10 to 14 would be considered normal by US standards. So I would not worry into your 14th birthday.

Are you developing otherwise? Breast buds? Body hair? If you are then it may just take a little patience.

You say you are Celiac so I hope you are on a 100% gluten-free diet. This is what your body needs to develop properly.

I am not underweight...I am considered a healthy weight and yes I have developed otherwise but have been for about two years...

Green Eyes Rookie

Hey CeliacAlli,

I do not have personal experience with celiac and puberty, but I have experienced both at different times. My best advise is to enjoy what life you have before you start your period. Every girl is different, you may follow the norm for the females in your family, but you may also be the exception to that rule. With being a female - all rules were meant to be broken.

If you are healthy with no other problems, just sit back, relax and it will happen in its own time!!!

Best Wishes,

Jennifer

finally diagnosed Apprentice
Has anyone who is a celiac or has a kid that went through puberty and had these issues with not having menstruation start at the expected age...by the looks of things I def. should have started by now? My doc is like avoiding it totally and mom isn't really sure about anything...don't think she really knows what to think. What to do?

btw..I am nearly 14 mom started 10 ish aunt started at 8

Give it time it will happen. Everyone starts thier period at different ages. If you are very athletic sometimes this prolongs it. But as long as you are healthy and things are starting to develop let nature take it's course. But as a precaution I would put something in my backpack for when school starts just in case it happens then. Good Luck.

samcarter Contributor

Alli,

My mom didn't start until age 16, I started at age 14. From her medical history and mine, I suspect both she and I had asymptomatic celiac disease. It will happen, all other things being equal. :)

Even though I started "late", I went on to have kids and everything has been fine in that regard. My mom had two kids with very little trouble, too.

celiac-mommy Collaborator

I started at 12 and my sister started at 16, it varies so much from girl to girl. Take advantage of this flow-free time ;) If it hasn't happened by 16, then revisit the situation...


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CeliacMom2008 Enthusiast

I don't have Celiac and started late. Then I went through years of annual periods instead of monthly. I too went on to have a child and very normal "regular" life. Really don't sweat this yet. 14 isn't that old. A close friend of our family is a pediatrician and she said there is a lot of research on kids going through puberty much earlier these days and many suspect it to be caused by the increase of hormones in our food. As a Celiac you may be eating healthier food that has less hormones added. I'm not a doctor, but it is yet another possible explanation. But the biggest explanation is that everyone is different. Averages are just averages. There will always be extremes on one end or the other. Your aunt was 8. You need to be 16 to average out your family! :D

sickchick Community Regular

I got mine @ 10. Think of it as a cramp-free blessing! lol :lol:;)

lovelove

YoloGx Rookie

I have had celiac since I was four months old--and started puberty at age 15 1/2. Yes, it varies. It may or may not have to do with having celiac. Mine went untreated after I was four years old so it could have something to do with the delay. I always looked way younger than my age. Of course now that is a good thing...

Bea

ShayFL Enthusiast

And some really GOOD NEWS is the later you start your period, the less chance you have of getting breast cancer later on.

Enjoy it!!

CeliacAlli Apprentice
And some really GOOD NEWS is the later you start your period, the less chance you have of getting breast cancer later on.

Enjoy it!!

That is REALLY good new!! Thanks everyone!

Calicoe Rookie

Hey Celiac Alli:

I started mine at 14 too. I've also heard that the later you start, the later you start menopause as well later on in life. So, consider it a blessing all around and don't worry.

HAK1031 Enthusiast

I started a month before my 14th birthday, and all hell broke loose from there. My periods were 3-5 months apart, and I got debilitating cramps and a heavy flow. I went on birth control when I was 15 and this helped a lot, although it took a LOT of experimenting to find the right pill. But I do think a lot of these issues could have been celiac-related. I was 5'8" and a C-cup before I started, so I guess you never know!

elonwy Enthusiast

Mine was a few months after I turned 14. I think its definitely all around better to get it at an older age. Enjoy the hassle free time :)

samcarter Contributor
Mine was a few months after I turned 14. I think its definitely all around better to get it at an older age. Enjoy the hassle free time :)

Funny thing, I thought I would start at 12, because all the other girls were starting, but when I didn't, I felt like "Ha! I got away with something!" I was happy not to have to deal with it. When I did start at 14, I was not happy, but my mom was ecstatic, because she started at 16 and thought something was wrong until she did. She was all "Yay! You don't have to wait like I did!" I was all, "Maaaan, I thought i wasn't going to have to deal with this!" :lol:

JNBunnie1 Community Regular
Funny thing, I thought I would start at 12, because all the other girls were starting, but when I didn't, I felt like "Ha! I got away with something!" I was happy not to have to deal with it. When I did start at 14, I was not happy, but my mom was ecstatic, because she started at 16 and thought something was wrong until she did. She was all "Yay! You don't have to wait like I did!" I was all, "Maaaan, I thought i wasn't going to have to deal with this!" :lol:

That was exactly my reaction! I was hoping it wouldn't happen til I was 16, got it at 13. It's totally normal for your period to show up either way after everything else changes, or even before sometimes. Your body knows what it's doing, enjoy not having to deal with it while you can!

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    • marion wheaton
      Thanks for responding. I researched further and Lindt Lindor chocolate balls do contain barely malt powder which contains gluten. I was surprised at all of the conflicting information I found when I checked online.
    • 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 
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