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Newly Diagnosed Would Love Some Guidance!

Klauren

By Klauren
in Coping with Celiac Disease

Recommended Posts

Klauren Apprentice
Klauren
Posted

Hi! Have been a guest for weeks, finally found courage to post. Diagnosed a week ago at 7 weeks postpartum after being in extreme abdominal pain and losing weight (all baby weight plus 15 lbs). I am very fortunate baby is healthy. My antibody test was off the charts, highest the doc has ever seen. I've been on diet for 6 days. Not feeling better, very weak, vertigo and intermittent severe abdominal pain at navel continues. What could be an unexpected "gotcha" that could be causing the pain, every single thing I put in my mouth is "clean" or I have confirmed is gluten free. Is it just not long enough on diet? I'm drinking Carnation Instant Breakfast French Vanilla with lactose free milk to try to gain weight and it seems to go down well. Anyone take meds or eat/drink anything that helps with severe pain?

One more question, anyone else have severe symptoms triggered during/after pregnancy? I had some symptoms during pregnancy, low weight gain and severe anemia (had to have iron infusions) and Celiac was never, ever mentioned or considered at all. I have read pregnancy is a common trigger, why aren't OB/GYNs on the lookout?

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Mother of Jibril Enthusiast
Mother of Jibril
Posted

Welcome to the group! :)

No need to be worried about posting... no question is a stupid question!

I suspect I've had problems with gluten my entire life. I definitely had symptoms of Hashimoto's by the time I was a teenager (a disorder that is more common in people with celiac and vice versa)... but nobody ever thought to test my TSH until last year. All three of my pregnancies (one of which ended in a loss at 17 weeks) made my autoimmune problems flare up BIG time... joint pain, post-partum depression, abdominal pain, crushing fatigue, constipation, major hair loss... and NOBODY ever thought to test me for any autoimmune disorder.

Anyway... in addition to being very sensitive to gluten, I'm also intolerant to corn. What works best for me is eating 99% natural foods... meat, fruit, vegetables, nuts, seeds, legumes, avocados, etc... I've stopped eating at restaurants. If my (breastfed) son wasn't extremely sensitive to all types of dairy products I would eat goat's milk yogurt instead of soy yogurt for breakfast. Otherwise, the only processed food I eat is dark chocolate (and I have to make sure it wasn't "processed in the same facility as wheat" or I get an itchy rash). I wouldn't touch something like Carnation Instant Breakfast with a ten-foot pole, no matter what the company says. I've found that only real, whole foods can promote the kind of physical and mental health I deserve :D

It sounds like you've had problems with gluten for a long time too. Unfortunately, even if you're being really careful about the diet it takes time to heal. I noticed a difference within the first 48 hours, but I still have my ups and downs.

Takala Enthusiast
Takala
Posted

Carnation just changed their labeling and website very recently because I remember looking this up a few weeks ago.

Open Original Shared Link

3. Do CARNATION

harp1 Apprentice
harp1
Posted

These folks really know what they're talking about. Of course barley is a no-no too. Susan

good luck :P

TES Newbie
TES
Posted

I wouldn't do the Carnation Instant. I think (I'm just learning too) I react to any type of vanilla in any product.EVEN when it says gluten free, if it has vanilla or vanillin , my body objects! When I was so malnourished I drank Ensure between meals until I felt strong enough to handle a regular diet. Just the basic food groups , all unprocessed, and since I used to cook so much, I am now making all of my baked goods, desserts, sauces, etc using most of my old recipes but of course all gluten free, distilled vinegar free and vanilla free. There is a delicious gluten free vanilla I use. I have a younger friend that has had multiple surgeries, losing most of her large intestine, started at pregancy, and I'm sure she is gluten intolerant.. Just heard on news that they think there might be a link between autism and premature birth...I bet the only connection is gluten.. I think the underlying cause of so many of our ailments/diseases is gluten...seems like no one is listening, should be on the lips of every physcian!

TES Newbie
TES
Posted
Welcome to the group! :)

No need to be worried about posting... no question is a stupid question!

I suspect I've had problems with gluten my entire life. I definitely had symptoms of Hashimoto's by the time I was a teenager (a disorder that is more common in people with celiac and vice versa)... but nobody ever thought to test my TSH until last year. All three of my pregnancies (one of which ended in a loss at 17 weeks) made my autoimmune problems flare up BIG time... joint pain, post-partum depression, abdominal pain, crushing fatigue, constipation, major hair loss... and NOBODY ever thought to test me for any autoimmune disorder.

Anyway... in addition to being very sensitive to gluten, I'm also intolerant to corn. What works best for me is eating 99% natural foods... meat, fruit, vegetables, nuts, seeds, legumes, avocados, etc... I've stopped eating at restaurants. If my (breastfed) son wasn't extremely sensitive to all types of dairy products I would eat goat's milk yogurt instead of soy yogurt for breakfast. Otherwise, the only processed food I eat is dark chocolate (and I have to make sure it wasn't "processed in the same facility as wheat" or I get an itchy rash). I wouldn't touch something like Carnation Instant Breakfast with a ten-foot pole, no matter what the company says. I've found that only real, whole foods can promote the kind of physical and mental health I deserve :D

It sounds like you've had problems with gluten for a long time too. Unfortunately, even if you're being really careful about the diet it takes time to heal. I noticed a difference within the first 48 hours, but I still have my ups and downs.

What kind of dark chocolate do you eat??

Mother of Jibril Enthusiast
Mother of Jibril
Posted

I like to buy chocolate that's at least 65% cocoa, which limits the amount of sugar (and casein from milk) and maximizes the antioxidants. Plus I love the taste :P The brands I buy the most often are Endangered Species (which has the best 90% dark chocolate I've ever eaten), Chocolove, Equal Exchange, and Green & Blacks. There's an ethnic grocery store in my town that has an outstanding selection of chocolate, but these brands are also available at my local health food store... Target and Kroger have some of them too. Look in the organic/natural section if you can't find them in the candy aisle. They cost a little more than your typical chocolate (Dove, Hershey's), but the taste is fantastic and you don't need a lot to feel satisfied. :)

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Klauren Apprentice
Klauren
Posted
  • Author

THANKS ALL! I feel like the Carnation stuff is helping me a lot it seems to go down smoothly, but I am going to try a day without it and see if it helps. I don't know how anyone drinks Ensure, that is the worst tasting stuff I have ever tried - I am determined to get my strength back... but I hope I don't have to resort to Ensure!

I guess we all just have to rely on trial and error to see what we can tolerate, but I am so anxious to build strength and accelerate my recovery. I was so hoping there was some good tasting, gluten free energy drink that could bring me back to life!!

Thanks again!

Mother of Jibril Enthusiast
Mother of Jibril
Posted

If it's energy you're looking for, some supplements could make a big difference... there are other kinds of anemia besides just iron-deficiency. If you don't mind another blood test you could have your B-12, ferritin, and vitamin D levels checked. Check your TSH too! If your thyroid is not making enough hormones that can cause fatigue. Some celiacs are low on B-12 because they have pernicious anemia (an autoimmune disorder known to cluster with celiac). If you have PA, normal supplements are not enough... you either need to get B-12 injections or take the tablets sublingually (letting them dissolve under your tongue so the vitamin goes directly into your bloodstream).

Some people get these tests automatically when they're diagnosed with celiac disease. But... as you've discovered, there are also doctors that don't have a clue.

Klauren Apprentice
Klauren
Posted
  • Author
If it's energy you're looking for, some supplements could make a big difference... there are other kinds of anemia besides just iron-deficiency. If you don't mind another blood test you could have your B-12, ferritin, and vitamin D levels checked. Check your TSH too! If your thyroid is not making enough hormones that can cause fatigue. Some celiacs are low on B-12 because they have pernicious anemia (an autoimmune disorder known to cluster with celiac). If you have PA, normal supplements are not enough... you either need to get B-12 injections or take the tablets sublingually (letting them dissolve under your tongue so the vitamin goes directly into your bloodstream).

Some people get these tests automatically when they're diagnosed with celiac disease. But... as you've discovered, there are also doctors that don't have a clue.

Thanks again! I asked the doctor about B12 and she said my hemoglobin levels look fine? I had iron infusions at the end of my pregnancy and that seemed to bring up my hemoglobin and ferritin levels. The dr said the only things that were "off" were liver and carbs looked crazy high. She said that would all correct itself after I was gluten free for a while and the bloodwork was consistent with a very recent diagnosis of Celiac. Is there any reason not to take vitamins as you suggest? I have been taking my kids gummy vites, they say gluten free on the bottle and are soft and easy to digest. I am focusing on eating soft things because EVERYTHING hurts A LOT going down and I am afraid to eat anything that might increase the pain.

Mother of Jibril Enthusiast
Mother of Jibril
Posted
I asked the doctor about B12 and she said my hemoglobin levels look fine?

B-12 has nothing to do with hemoglobin :ph34r: It's not part of the standard CBC/CMP, so you'd have to ask for that test separately.

I think it's fine to take your kids' gluten-free gummy vitamins if you want to :lol: It won't hurt... you just might need to take more than the recommended amount.

Vitamin D is quite safe to take on your own. You can check out this website and figure out an appropriate dose (www.vitamindcouncil.org). I've started taking Country Life's "Solar Gems" which are also gummy... lemon-flavored cod liver oil in a gelatin shell. Tasty! Even my three-year-old daughter likes them.

The B vitamins are also safe to take on your own (not like iron supplements). Have you ever taken Emergen-C? It gives you a solid dose of vitamin C and the B vitamins. The great thing is that it dissolves in water and makes a fruity drink... no tablets to swallow.

  • 7 months later...
steelersfan Newbie
steelersfan
Posted

Even though Carnation Instant Breakfast's website says that their powdered products are gluten free (except the chocolate malt), the box states that it is processed on equipment that processes wheat.

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      Contact them.
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