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GlutenMama

No period after stopping gluten

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My 20 year old daughter was diagnosed with celiac in January 2017. Her last normal  period was just days after she stopped eating gluten last January and hasn’t had a period since (9 months!!!) She went to gyno and all hormone levels are normal and ultrasound showed no problems with uterus or ovaries, other than a few “normal” cysts which apparently we all have. Her doctor really didn’t have any answers and did not want to rush to put her on bc. My daughter is so frustrated and obviously concerned and I don’t know what to do. I’m wondering if my daughter should get a second opinion from another gyno or see a nutritionist. It can’t be a coincidence that my daughter’s very regular cycle completely stopped right after she stopped eating gluten. 

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I am sorry that your daughter (and you) are experiencing this.  After diagnosis, celiacs need adequate follow-up care.  When was the last time her antibodies were checked?  Have they come down?  Are they still very elevated?  This link verifies what I said:

http://www.cureceliacdisease.org/faq/how-often-should-follow-up-testing-occur/

By testing you can help rule out active celiac disease.  It can take most celiacs a year or years to recover from celiac disease and all the collateral damage that can come with it.  

Then you might consider a dietician who is knowledgeable about celiac disease.  Often going gluten free is not enough.  People tend to just find substitutes for their already unhealthy food choices.  She should focus on fresh fruits, veggies, meat, nuts, dairy, legumes, rice, etc.  and avoid processed foods until she has really mastered the diet.  The learning curve is so steep!  Read our Newbie 101 thread found at the top of our Coping section.  It contains helpful tips.  

Autoimmune thyroid is very common with celiac disease.  Be sure to have her thyroid checked and antibodies tested for the thyroid as well even if other thyroid lab markers are okay.  

Besides the lack of periods, have her other symptoms improved?  

I wish you both well!  As a Mom myself, I get the worry!  We want our kids to be safe and healthy!    I am glad you are championing her health!  

Oh, did the rest of the family get tested even if symptom free?  

 

 

 

Edited by cyclinglady

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My cycle is sensitive to gluten. As my conditioned worsened misdiagnosed after the birth of my second child I suspected my thyroid was off. A primary care Dr tested it per my request and I was determined normal results.  Even as gluten-free now if I get CC my period gets knocked offline and I sense my thyroid and adrenals are not functioning at full throttle but ironically I never show that per tests. I'm subinical -

To assist my body back to my homestatsis and restore order to my period I find eating foods and taking supplements with focus on B vitamins, and supporting my adrenals help. 

Warning my experience is once knock offline when my period cycle "fires" back on it is strong like when I was young and Newly menstruating. My body fires back on and is mad at the glutening.

as cycling lady said your daughter may need to meet with nutritionist or have her levels tested. 

My opinion it will come back but when the body is focused  on healing sometimes the period is dumped a bit, and with absorption issues the typical nutrients are going to healing so one needs to assure they have enough nutrients for other systems function like menstral and adrenal.

good luck I'm optimistic it will return perhaps her body is prioritizing nutrients to healing.

good luck

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Wheat provides certain nutritional elements that would need to be compensated for after going gluten free. This is especially true with commercially produced wheat containing foods because they are "fortified" with added vitamins. Does your daughter eat healthy and does she use a quality brand gluten-free multivitamin? If you live near a Costco they sell vitamins and supplements that are gluten-free. Personally, I use their Kirkland multivitamin, B complex, B12 and D3. I also take iron. Even though I am a male and eat gluten free I find I start to get anemic if I don't take the iron. Even after going gluten free many Celicacs find their assimilation of nutrients never returns to being fully normal due to leaky gut or permanent damage to the villi or whatever. There are still things that we don't fully understand about celiac disease and going gluten-free, as essential as it is, does not necessarily restore the gut to normal health. There probably is a greater likelihood of more complete healing if the disease is caught quickly and at a relatively young age. Your daughter has that in her favor.

Having said all that, I would suspect the real issue is something not related to nutrition. The fact that this menses issue started soon after going gluten free may be coincidental.

And I agree with what others have said. Your daughter needs to have follow-up blood work done for the Celiac antibodies and I would also think a follow-up endoscopy is in order to see what is the condition of her villi. And recommending the thyroid check is also an excellent suggestion.

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Thank you all for taking the time to respond.  It's comforting to know I have a place to ask questions and share my concerns.  

My daughter's antibodies are as follows:

1/9/17:  783.6 (before stopping gluten)

5/16/17: 69.7

8/14/17: 50.6

Her thyroid/hormones all in normal range.  An endoscopy in May showed her villi looked good with minimal damage. Her B12 (checked on 8/14/17) is excellent.  Her antibodies will be checked again when she returns home in Dec.  She avoids gluten as much as possible, however she's away at college so cross contamination is likely.  She eats extremely well -- mostly salads, vegetables, protein, fruits, rice.  When on the go she supplements with kind bars, quest bars, or Rx bars.  She'll snack on gluten-free crackers (Blue Diamond made from almonds), hummus, peanut butter, and popcorn.  Once in awhile she'll treat herself to Tate's gluten-free cookies or Halo ice cream.  She's in college so, yes, she drinks alcohol on occasion.  Titos gluten-free vodka, but no beer!  Since stopping gluten her stomach feels much better, less bloating and pain (her main complaints before stopping gluten).  I do notice when she's home on break from college she will have a healthy, nice sized portion of food at each meal and say she feels very full afterward, yet shortly after she will feel hungry again and need to reach for a snack (always a healthy one).  She takes 2 gluten free gummy Multi-Vites (same as Costco brand I believe) as well as vitamin D daily.  

She was diagnosed with celiac on 1/11/17, stopped gluten immediately, and her last period started on 1/13/17.  For six years her period was very regular and it only changed once she stopped eating gluten.  I have to believe there is a connection.  The frustrating part is that nobody has any answers.  I know my daughter would feel a lot better if her cycle returned.  We will seek the advice of a nutritionist as well as continue speaking to doctors, but in the meantime if you have any more suggestions I welcome them (i.e., foods, supplements, vitamins, etc).  Thank you all very much!

 

 

 

 

 

 

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It could be celiac disease related or not.  The fact is her antibodies are still elevated.  They have come down dramatically (great job!) and she has had some  intestinal healing, but she is not completely healed.  She probably needs more time.  She is under a lot of stress which is known to affect menstrual cycles even excluding celiac disease.   She has been malnourished (think concentration camps...extreme, but you get it)  and still is based on her eating habits you described.    She  is a student who is away from home and has to deal with celiac disease every single moment on her own.    Every bite of food must be checked.  That can be exhausting!  It will get better, but it takes time.  It can take a long time to heal.  

The fact that it occurred when she stopped gluten is probably a coincidence.  It probably added even more stress.  Can you imagine a life-long dietary change?  Ever dieted?  How long did the diet last?  

Give it more time for her antibodies to come down.  She is still being attacked. They are not in the normal range.    Most take a year or longer to heal.  Ask anyone here.  Read through forum comments.  

How about baking her some chocolate chip gluten-free cookies and shipping them to her?  Or mail a fruit basket.  You both will feel a bit better.  

Hugs!!!!

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