I Need Help Please!

[missmommy]

i need help please! i am 3 months pregnant. i found out im a celiac 2 days after i found out i was pregnant. i have never been sicker in my life! ive been gluten-free for 2 months, but it doesnt seem to be working. ive lost over 7 pounds, and my obgyn just says "dont worry about it", she has also never heard of celiac disease before me.

she sent me to see a GI dr, he told me thats its possible that pregnancy tiggered the celiac. and since it runs in famliys i might have hd small symptoms before in my life.

although ive already have two little girls, and never had problems before, ive always been healthy. the only reason i found out is because my mom also has it (she is pretty new to it also, less than a year) but she told me to get tested since all of the sudden i was so very sick (that is before i realized i was pregnant). the dr that had me tested never heard of it and had to send my blood work out of state. then all she did was tell me over the phone, and "not to worry, it shouldnt be to hard just dont eat bread or crackers".

right now my ob has me seeing her and two other drs an she wanted me to go to a diabetic class. none of them know anthing and just tell me to get info off the net.

im sorry to go on and vent so much. but im feeling pretty helpless. my husband tries to help and thats nice. but i need to know how to get better. i have a headache/neckache everyday and all night. ive been lossing weight. im usually pretty lightheaded and dizzy and tired all the time. and also my arms and feet go numb alot, and not only when im laying down. its got me pretty freaked out. none of this is usually like me, normaly i cant stop going and have energy to have fun with my kids. and now most days i wont even get on the computer because looking at the scrren makes my head hurt worse.

[Ginsou]

I've been lactose intolerant for 30 years, and the past 3 months have been very ill. I am still waiting for gluten intolerance tests to be returned. I do not have insurance, and waited until I was in so much pain that I had to go to the emergency room. No diagnosis was made, and I was referred to a gastroenterologist. Had to wait three weeks for an appointment.

You need to be concerned.....gluten intolerance affects your intestines, and there is no cure ,but it can be managed by a strict diet. Check out info on www.webmd.com, Mayoclinic.com and other health websites.

Gluten is in just about everything, not just bread and crackers. You need to go on a strict gluten free diet, and unfortunately most doctors don't know much about the disease unless they specialize in celiac disease. The internet is your best source for information right now. Head to your nearest Wild Oats, Whole Foods, or natural food store. They will have gluten free rice cakes,frozen waffles (Van's) gluten free pasta (Tinkyada brand is excellent) gluten free baking mix, flour, brownie mix, cake mix,gluten free rice cereal,etc. I have not tried all brands yet, but Bob's Red Mill seems popular among others. Pamela's products has some wonderful cookies in packages.Keep in mind, soy sauce, maple syrup,worcestershire sauce (except Lee & Perrins), seasonings,batters, etc. also contain gluten. Medications/prescriptions also contain gluten. You will have to spend the rest of your life reading labels, making wise food choices.

For now, keep a daily food diary of everything you eat. You should eat nothing but fresh meat, fruits, vegetables for now, until you educate yourself about the condition. A meal supplement, such as gluten free easy to digest SlimFast may help with your weight problem.

I've only been on a gluten free diet for about a week now, and have spent hours on line getting free recipes,learning what products are available. Gluten free products are very expensive.....I hope you are a stay at home mom, because you will be doing lots of gluten free cooking from scratch. Don't spend hours at a time on computer. An hour a day might be better, and print off all info you can so you can read it at your leisure. Your headache could be from spending hours on computer. There's plenty of emotional support out there for you.

[missmommy]

thank you so much for responding

i guess i forgot to mention i have been gluten-free for two months now, well i think i have! nd i really dont go on the computer very often. i have more since i found out, mostly tring to find answers, and recipes. i might total 3 hours a week. my hubby has been doing most the research lately since i really dont want to be on. but he is in the navy and he is in guam right now. so im on the laptop today

i think your slimfast idea was great thou! i had no idea it was gluten-free, i think i will also try the food diary starting in the morning. maybe i will be able to pinpoint something i was missing? but i have been tring very hard to either read my lables or call companys, thats why i feel like im just missing some important piece to the puzzle.

[Guest micah]

It is scary! I'm just learning how to be gluten free (since 6/19/07). Is it possible you may still be getting some gluten - is that possible? I'm sticking to a handful of foods that don't seem to bother me (Ore-Ida frozen fries, Jello pudding) plus frozen or canned fruits, veggies, meats, fish, rice, corn, dairy. Last week I cut out egg and that seemed to boost me a little more. I'm not even using recipes right now, but just eating the basics plus those few other things. Is it possible that some of what you are feeling is morning sickness? Mine was much worse in the pregnancy I had after I got sick.

Have you checked your pre-natal vitamins? Just a thought. Hopefully there will better ideas - I'm sorry you're having such a hard time. Don't give up, maybe the diary will help you pinpoint something that you are reacting to.

Micah

[gfpaperdoll]

Ginsou, You might try going dairy free also. My sister thought she was dairy free but she was using a "lactose free" additive to her coffee & it still has dairy, casein, she cut that out & had major improvements. & I agree with another post in two months you have probably not been completely gluten free because of slip ups, & cross contamination, there is a huge learning curve.

hate to be the bearer of bad news, but since I see you live in Louisiana, I am sure you are using an iron skillet or two. (well maybe the young moms don't) You will need to get new iron skillets, because the gluten protein hides in the porous skillet & is enough to make you sick. Believe me on this because I had to get rid of my skillets after saying it was not making me sick, & then I noticed I was using my stainless steel skillets more...

Open Original Shared Link

here is a link to the Celiac Disease Foundation support group in Baton Rouge, if that is too far you might contact this person to find one nearer you.

Open Original Shared Link

This is a link to check your medications

Open Original Shared Link

This is a link to the Houston Support Group - I think they have a great site

Also, you should just take your whole house gluten free. It is really the easiest thing to do. With a new baby on the way you do not need the hassle of trying to not get sick from giving the kids wheat cookies & stuff...

[wowzer]

Also check your cosmetics, body wash, soap, shampoo, lotion. Many of these contain gluten. I hope that you are feeling better soon.

[GFhopeful]

sorry things are rough right now - i can't imagine being in early pregnancy AND going through the Celiac illness and recovery! You are doing well to make it out of bed, in my book. I am nearly 2 months in eo Celiac/gluten-free and still do have days where I feel dizzy/light-headed and I'm thinking it's part of recovery and building back up stamina and confidence. I hae a 15 month old and a 3 year old and know how mentally difficult it is to be in bed while life is going on around you. But I am happy to say that most days are good days. DOn't under-estimate the power of alittle gluten and it was making me sick when I thought i was being super-careful. I would go fresh fruits/veggies, rice, potatoes, chicken, no dairy - it has helped me! I am not even doing foods marked gluten-free yet as I figure I can add those in later as I am feeling better, just basics above! Feel better!

[Belinda Meeker]

i need help please! i am 3 months pregnant. i found out im a celiac 2 days after i found out i was pregnant. i have never been sicker in my life! ive been gluten-free for 2 months, but it doesnt seem to be working. ive lost over 7 pounds, and my obgyn just says "dont worry about it", she has also never heard of celiac disease before me.

she sent me to see a GI dr, he told me thats its possible that pregnancy tiggered the celiac. and since it runs in famliys i might have hd small symptoms before in my life.

although ive already have two little girls, and never had problems before, ive always been healthy. the only reason i found out is because my mom also has it (she is pretty new to it also, less than a year) but she told me to get tested since all of the sudden i was so very sick (that is before i realized i was pregnant). the dr that had me tested never heard of it and had to send my blood work out of state. then all she did was tell me over the phone, and "not to worry, it shouldnt be to hard just dont eat bread or crackers".

right now my ob has me seeing her and two other drs an she wanted me to go to a diabetic class. none of them know anthing and just tell me to get info off the net.

im sorry to go on and vent so much. but im feeling pretty helpless. my husband tries to help and thats nice. but i need to know how to get better. i have a headache/neckache everyday and all night. ive been lossing weight. im usually pretty lightheaded and dizzy and tired all the time. and also my arms and feet go numb alot, and not only when im laying down. its got me pretty freaked out. none of this is usually like me, normaly i cant stop going and have energy to have fun with my kids. and now most days i wont even get on the computer because looking at the scrren makes my head hurt worse.

Sorry u r feeling so crappy

I to had gone gluten-free so I thought....

I was eating chips from Lays / ingredients r potato's sunflower oil salt....but for some odds reason when I eat them I break out in hives as I do with anything containing gluten or it's buddy's

so maybe u too r misssing hidden products like I was

Now if it doesn't say gluten-free it doesn't come anywhere near my mouth or body

So maybe u need to only do a food at a time like I had to do.

I always wondered why I had hives and now I know the hard way (Severe laytex allergy too) but breads, chips, cheetos, crackers some drinks too r culpretes too, so try one food at a time and find ur culprete !!!! (is ur other family members gluten-free? Maybe their cross contaminations getting u too?

Good luck hope u get to feeling better soon, it's the best time I think was being Preg.

[Karen B.]

----snip-----

hate to be the bearer of bad news, but since I see you live in Louisiana, I am sure you are using an iron skillet or two. (well maybe the young moms don't) You will need to get new iron skillets, because the gluten protein hides in the porous skillet & is enough to make you sick. Believe me on this because I had to get rid of my skillets after saying it was not making me sick, & then I noticed I was using my stainless steel skillets more...

----snip----

In the first year of my diagnosis, I kept getting sick every time I used my favorite cast iron skillet until someone told me to burn it out and reseason it. IIRC, I put it in my oven (upside down) at 500 and left it for 3 hours and then turned the oven off for the night. The next day I followed the standard instructions for reseasoning. I forget who told me about this but they said it carbonized the gluten to ash.

I haven't had any problems when using it since then but I have to admit I still prefer my steel pan for ease of clean-up.

[Ginsou]

thank you so much for responding

i guess i forgot to mention i have been gluten-free for two months

No, you didn't forget to mention it....I'm brand new here and thought it was your first post. I'm slowly learning how to use the forum. I'm also contacting companies and asking about their products. I never realized Celiac was so common!!

I think I read somewhere that in 2008 the FDA requires gluten to be listed on products. My gastroenterologist told me about Slimfast...apparently it's new on the market. She is also lactose intolerant, so she is right up to date on everything

[harley]

Hi. I just wanted to add that I am also pregnant with Celiac-about 14 weeks pregnant. My celiac was under control until I got pregnant. I have been sooooooooooooo sick with Celiac symptoms since I got pregnant. I completely understand what you are going through. I am not dizzy but am using the bathroom many times a day-if you know what I mean.

My Ob is not that concerned. I have seen my stomach Dr. who is also not that concerned. Both have said that the pregnancy hormones can really screw up your GI tract and make the Celiac worse. I wanted to do a repeat endoscopy but my Dr.s are not comfortable doing ot while I am pregnant.

Also, like you, having trouble gagining weight.

I hope you feel better soon and good luck with the pregnancy. Try not to worry too much. Keep me posted.

[Meemsy]

Thank you KarenB and GFpaperdoll for the info on the cast iron pans. I have my Gramma's set and have been using them for years. Last night I felt as though I had been glutened but for the life of me I couldn't figure out from where (since I cooked the whole meal myself with known ingredients). I just assumed it was something else going on with my body. I will try reseasoning the pans and see if that helps.

Missmommy, you can also try driniking the high calorie Ensure (I just checked online for an ingredient list and the one posted shows that they are gluten-free, though I would check the label at the store). Definately look into your pre-natal vitamins, and check the labels on everything going into your mouth extra carefully.

Best wishes to you and your family on your impending arrival...meemsy

[Karen B.]

Thank you KarenB and GFpaperdoll for the info on the cast iron pans. I have my Gramma's set and have been using them for years. Last night I felt as though I had been glutened but for the life of me I couldn't figure out from where (since I cooked the whole meal myself with known ingredients). I just assumed it was something else going on with my body. I will try reseasoning the pans and see if that helps.

----snip----

I must admit I've never seen the issue with cast iron skillets posted in an "official" site. I just noticed the effect when I used that pan and someone on the Celiac newsgroup mentioned burning it out to carbonize the gluten and re-seasoning the pan. Since cast iron is so durable, I figured what did I have to lose by trying it. It worked for me.

Good Luck!