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Cows573

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Cows573 Newbie
Cows573
Posted

After months of being sick, and tested for everything else, all negative, sick of being sick, I tried a gluten free diet.

It definitely helped, except for accidental gluten, and taking ibuprofen...

Can’t face being tested, as I appear to be very sensitive to gluten now...  

But, I’m really struggling not to lose more weight, and my periods have stopped.  On a bmi scale, I am on the edge of underweight, but look ill.

I was slightly gaining, prior to ibuprofen and accidental gluten, but lost another eight pounds since...

Starting to be scared to eat, or eat around people eating gluten....  can anybody else relate?

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notme Experienced
notme
Posted

just curious about the ibuprofen - any that i have used is gluten free.  i have been told it contains iodine which may irritate your dh if you have that lovely celiac symptom.

try keeping a food journal - watch out for hidden gluten like barley malt or 'regular' soy sauce, which is made of wheat, etc...

read all labels - lay off eating out for awhile until you get your 'ce-liac legs'  (lolz)

i was very malnourished when i went off gluten (at the advice of dr dumba$$ haha) and then i gained like 20 lbs in the first month.  it was obvious gluten was a problem.  can you get tested to rule out other things like chron's or ulcers, etc?  you won't hafta do a gluten challenge to get other things documented that your problem is *not* - my g.i. doc did a bunch of tests like that bc she didn't want to risk me re-losing weight.  (they were threatening a feeding tube before they got the genius idea that it could be celiac lolz) 

Cows573 Newbie
Cows573
Posted
  • Author

I have been told, ibuprofen is not good, if you have any tummy issues...

I am being ultra careful regarding Hidden gluten, but recently, was from my husband kissing me, after pizza and garlic bread!

notme Experienced
notme
Posted

here is a pretty good link - some of the info is old, but you'll get the basic ideas.

no kissing without brushing!!  soap and water, not hand sanitizer!!  also, you can hand wash your dishes or use the dishwasher - so long as your dishes are clean, lolz

keep that food journal - lay off dairy for awhile as if your villi are damaged, you will have difficulty digesting dairy.  i got lactaid and i still use it even though i can digest dairy now (and my husband likes it lolz)  also, oats are problematic for some of us.  i just got them back after, what, 8 years?  if your guts are inflamed (which should settle down) you may have trouble digesting certain things - in the beginning i couldn't eat raw veggies but now i can.  keep your journal and your reaction to eating and you may have to cut out some things but you might be able to add them back in as time goes by.  cutting out chocolate = almost killed me = but i can have it now!!  yay!!

Cows573 Newbie
Cows573
Posted
  • Author

I don’t tend to eat sugary things away, after trying to lose weight, after putting a lot on, a few years ago...

I don’t eat chocolate, generally, but going dairy free, would definitely be an issue!

After two months gluten free diet, I was feeling much better, with less and less symptoms.

But, kind of back to square one, with ibuprofen and glutened...

Simply, getting sick, of being sick!  I was, starting to gain a few pounds, but lost all that and more recently...

Has anyone else, had there periods leave, on a gluten free diet?

notme Experienced
notme
Posted

that could be from you being underweight?   many women have reproductive issues and symptoms including missing periods and miscarriages (sadly, i had one long before i ever heard of celiac)  also, hormones will 'fake' a glutening, so pay attention to when your period would come even if it doesn't.  it may mimic a glutening (mine used to, even after i hit menopause i marked the calendar every month bc those lovely hormones are still happening, just not a whole lot)  around that time, i was always like:  what the heck did i eat lolz.  you could also try rotating your diet (not eating the same foods every day - i try to stay on a 3 day rotation, but usually every other day i can get by with)

as time progressed, i started shedding symptoms, like peeling an onion.  i even had a headache i didn't know i had until it went away.  i was so used to my head hurting lolz.  more energy, less brain fog, joint pain gone - sooooo many symptoms that doctors were basically treating as separate issues, but since celiac is systemic, it affects your whole body.  it is mistakenly dx'd as fibromyalgia, epstein barr, lyme, lupus - many other things - when all i really needed to do was change my (WHOLE ENTIRE LIFE LOLZ) diet :)

Cows573 Newbie
Cows573
Posted
  • Author

I was thinking weight loss, but had heard gluten free diet can stop periods...

Had regular periods at this weight before...

My accidental glutened, was after my period would have been due.  No chance of miscarriage or anything, as my partner has been snipped...

I am nearly 42 years old, and have no symptoms of early menopause either.  Regular as clockwork, then simply gone!

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cyclinglady Grand Master
cyclinglady
Posted

I would bet that your low weight may have impacted your menstrual cycle on top of possible elevated celiac antibodies.  Celiac disease is systemic!   Why would giving up wheat, barley and rye impact your menstrual cycle?  Lots of cultures never eat gluten (think Native Americans in Alaska) and they reproduce.  Some people do lose weight fast on the gluten-free diet because they reduce their calorie intake for reasons like being afraid to eat because it is going to hurt! Antibodies can remain elevated for over a year.  Consider asking for a celiac blood test even though you have been gluten free (believe me, the gluten-free diet has a steep learning curve and you may not really be gluten free and this is backed by data showing that about 60% of celiacs are still getting gluten into their diet).  Besides, celiac blood tests are used to help monitor celiac disease.    

I would advise a trip to the doctor.  Many women enter menopause early.  Get your hormone levels checked.  Guessing is not going to get you far.  Here are the celiac tests:

http://www.cureceliacdisease.org/screening/

knitty kitty Grand Master
knitty kitty
Posted
On 3/13/2019 at 7:41 PM, Cows573 said:

I don’t tend to eat sugary things away, after trying to lose weight, after putting a lot on, a few years ago...

I don’t eat chocolate, generally, but going dairy free, would definitely be an issue!

After two months gluten free diet, I was feeling much better, with less and less symptoms.

But, kind of back to square one, with ibuprofen and glutened...

Simply, getting sick, of being sick!  I was, starting to gain a few pounds, but lost all that and more recently...

Has anyone else, had there periods leave, on a gluten free diet?

 

On 3/13/2019 at 8:16 PM, Cows573 said:

I was thinking weight loss, but had heard gluten free diet can stop periods...

Had regular periods at this weight before...

My accidental glutened, was after my period would have been due.  No chance of miscarriage or anything, as my partner has been snipped...

I am nearly 42 years old, and have no symptoms of early menopause either.  Regular as clockwork, then simply gone!

Vitamin D deficiency can cause menstrual irregularities.  Vitamin D acts like a hormone and helps regulate your cycle.  Because Celiac Disease causes malabsorption, many people develop deficiencies in vitamins and minerals. You might want to have your doctor check your Vitamin D level with a blood test.   Hope this helps

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    • trents
      How many people here are aware that there are 9 types of gluten that Celiacs should be aware of?

      By trents · Posted

      @Bebygirl01, if you want to play word games with the term, "gluten", we can do that. The proteins you list in these other cereal grains besides wheat, barley and rye are somewhat different from that found in wheat, barley and rye and, technically speaking, are not "gluten". Technically speaking, "gluten" should only be applied to a particular protein found in wheat, barley and rye. These other cereal grain proteins have their own names (avenin, secalinin, zein, etc). Unfortunately, confusion has been created in popular and pseudo scientific literature by the informal use of the term "gluten" when talking about the proteins found in these other cereal grains such that you sometimes read about "corn gluten", "oat gluten", "rice gluten", etc. But these are actually misnomers, with "gluten" having been added on as an informal appendage to the actual protein names. Having said that, the protein structures of these other cereal grains is close enough to gluten that, for some people, they can cause a celiac type reaction. But this is not true for most celiacs and those who fall into the NCGS category. Apparently, it is true for you. This whole idea that cereal grains are bad for all of us has been popularized by books such as Dangerous Grains for years but it is not a widely accepted idea in the scientific community.
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      How many people here are aware that there are 9 types of gluten that Celiacs should be aware of?

      By Bebygirl01 · Posted

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    • Scott Adams
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