OptimisticMom42

Hello Shan,

Boy, I haven't been here in a long time! I lived here when I was first diagnosed. So here's the thing...... it seems really sudden but as you get well things will go away that you had gotten used to or had attributed to other things. You attribute much to your weight that could be celiacs. Your weight itself could be celiacs. Those allergy headaches, those sore feet, the pain in your lower back.......

I was over eating because I wasn't absorbing nutrition. I was always hungry.

I had allergy headaches because I was eating things I was allergic to and because I was low on vitamin D.

I had pains in my feet because I was low in magnesium and had started developing neuropathy.

I was having pains in my lower back (mild cramping) because I was eating dairy which I found I am also allergic to.

There's more but the reason I stopped coming here was because I got tired of hearing myself whine LOL and needed to get on with feeling better.

So soak up all the knowledge, start feeling better!

I'm not saying this is what you have, but worth ruling it out since it stands to reason that it could keep elevating your level if untreated.

That was my first thought also. The doc didn't seem to think so (until it hits 100). I think he should wear clothes pins on his nipples until he agrees it's time to treat. That way we can share the pain!

And he should eat nothing but chicken breast, green beans and organic spring mix, get lots of sleep, do yoga, work 45 hours a week and run a household full of teenagers and pets. You know just so the clothes pins can be on his last nerve like mine!

Thanks for your reply. I'll call the doctor's office and see if I can talk them into it.

RA

Hello Ladies,

It's been awhile since I've been here so I'm hoping you will excuse my absence and answer my question anyhow.

Around about Dec. I started having heavy periods, breast pain, swelling, hard nipples that itch intensely. I googled and decided it was perimenopause. I'm 44. Tried wild yam root. Bled for four weeks stright. No more wild yam root for me.

Finally went to my sister's gyno and had lots of tests. Everything normal except my prolactin was too high (59). The doc said I probably have a tumor but at any rate they don't treat unless it hits 100.

Googled again and found that high prolactin in celiacs is indicative of active desease so I am being extremely careful with my diet. My last period was almost normal and the swelling has gone down but the pain and itching continues.

Anyone been through this? What can I do to make it stop? If it's just diet how long will I have to limit myself to my "safe diet" before I should be seeing some relief?

Thank you for taking the time to read my post.

RA

PS not sure if this is related but I am also fighting yeast AGAIN! taking acidolphilus pearls

I always assumed it was the same hormones that tell your body to empty before going into labor. I have the opposite problem, I tend not to go the week before and have to be diligent about my diet (no corn, cereal ect.) that week. So right when I'm carbo craving I have to cut back or use laxatives.

www.talkaboutcuringautism.org

website TACA- Talk about curing autism

There is a page on a Glutenfree CF Diet on Food Stamps

They have some good ideas. I liked "make a menu" and "cook like grandma". Grandma has been making gluten free potato soup for the kids. That sounds wonderful right now. Think I'll call and ask for her recipe.

Thanks RA

Someone previously suggested Aldi's for great buys on a lot of foods. We have Save-A-Lot stores here, too, with lots of cheaper prices...may be their own "off" brand but the store is always busy.

Not know where you live, there might be similar type stores in your neighborhood.

I drive past a Sav-a-lot on my way home from work. I've avoided it because the floors are always dirty and there are no bags but I guess I'll have to give it another shot. My neighbor used to take me to the Kroger an hour from here when my kids were little. It's an old store where people who have lived there for generations shop. I haven't been there in years. I'll have to give it another look also. Wonder what my neighbor is doing tomorrow?

Thanks RA

My friend fell and won't be able to go back to work for awhile. Not sure he'll have a job when he is able too. No insurance. This whole year has sucked. We have been doing the rice and cheese but it makes me dizzy so I think my sugar is off. The extended family has been bringing venison over. It's still bow season here. Yesterday I started looking for recipes for wild boar LOL cause they keep talking about those on the news.

So I'm off to the store to by beans, hmmm beans and venison soup, better get an onion (and matches for the scented candle!).

Thanks RA

I'm looking for ideas on how to be gluten free on a budget. And I'm serious guys there isn't any money to send away for cases to save money per box. If I had hundreds to spend I wouldn't be asking. We use to eat macaroni, ramen noodles and kool aid when money got tight. Now what do we do?

Thanks RA

Loving this thread LOL. For me the gas is the worst. I cleared out an entire video game store with one fart! It was silent, but all the customers left and the clerk stepped back from the counter as I walked up. My son's face was so red but he really wanted that game. I will never eat gluten intentionally!

I have a question for all of you who posted in this forum. Are any of you celiacs or did you do this on your own.. or was it suggested?

Our journey started with a fellow celiac noticing the itchy bumps on my elbows.

I was diagnosed by my immunologist. He said the reactions were so obvious he didn't need to test me.

My son's blood work came back negative, three times, because we didn't know his meds have an antihistamine property. Now we know. He was diagnosed by two doctors even with the negative blood test and no biopsy because the rest of his symptoms were so obvious.

My daughter has not been tested and is not interested in testing or getting the migrains that come with eating gluten.

My younger son's girlfriend was diagnosed by a specialist her Mom took her to for repeated urinary tract and bladder inflammation.

The girls are not having mental health issues beyond normal teenage PMS.

As far as Celiac stunting your growth/height, I would imagine that all that would have to do with when your body actually started reacting to gluten and how long it took you to stop eating gluten/figure out the problem. If the problem didn't kick in until adulthood, then I would think those individuals' heights would not be affected like a child or infants would. I would think that most people whose height would be affected would be those who had problems from very early on and didn't know what the problem was, so the malabsorption problems affected their growth when they should've been growing the most.

I agree the age at the time of onset would affect height. I'm 5'6", the tallest woman in my family. Didn't get sick until over age 30. My kids had weird allergies and stuff from early on. The boys are just over 6' and the girls are still growing but much shorter than I am.

I've posted this info here before but for those who are new..... My now 19 yr old son was diagnosed as bi-polar and celiac after attemping to end his life by crashing his car. He has gone back and forth from eating gluten and hearing voices to being gluten free and totally down to earth and peaceful. Lots of meds have been tried. The ones that work for him are basically benedryl and a mood stabalizer mixed together. He is currently med free after a period of weening down. He has to report to the prison nurse twice a day, the psychologist once a week and the psychiatrist once a month. He keeps benedryl in his cell to help regulate his reations. He is not able to be completely gluten free as being on a special diet makes an inmate a target for unwanted attention. He does what he can with what is served in the chow hall and what he can buy from the prison store. This was his first and only offense, committed when he was 17, his sentence is 29 months to 10 years. He has served 13 months.

He will be fine, we are dealing with it. I am sharing this information because it's important to know how serious the consequences of untreated celiacs and the resulting mental illness can be.

Take care, RA

I take liquid children's benedryl and use hydrocortisone cream. It stops the itching pretty well for me.

I'm not a good cook so I just buy my bread at Meijers while I'm there getting my gluten free waffles. I like the flax seed one they have in the frozen food section. And then I get to look for new shoes

Because you are a caretaker for so many others, I think that learning about being gluten free is a really good idea. If you are caring for 80 girls chances are that at least one of them needs to be gluten free and that if she gets sick you will be called on to make it less uncomfortable for her.

Welcome to the forum, RA

Our house is different because we are currently three celiacs to two bread eaters. It was four to two but one grew up and moved away . Anyhow all meals are gluten free no matter who cooks it. The bread eaters have a cupboard with cheerios, bread, granola bars and their own butter, jelly and peanut butter. If it's in the community cupboards or fridge it has to be gluten free. We use squeeze containers and the no double dipping rule for condiments. The celiac kids are 43,19,18, and 16 so we have to be able to grab a safe snack or meal and run back out the door. It's been over a year now and the biggest problem now it rememberig to read the labels of foods we trust to check for changes.

Take care, RA

I don't think the gluten is stored in the fat. I don't know about the antibodies though. My first question would be what are you eating? Have you simply decreased food and increased activity or are you using meal replacements and artificial sugars?

Many low carb items have soy, are you by any chance sensitive to soy? Some of us will also be sensitive to artificial sugars and some will even have issues with natural sugar replacements. Stevia for example is related to ragweed and folks that are allergic to ragweed may react adversely to that.

I've been drinking diet soda or coffee with instant breakfast. And a normal meat and veggie dinner with smaller portions than usual. Keeping myself under 1400 calories and working 10hr days, on my feet, no sitting down. So yes, I have had artificial sweeteners. Could be a small amount of cc in the instant breakfast though nobody else in the house is reacting to it. When I do the low carb thing it's just eggs, meat, greens and strawberries and I still get glutened. I kept thinking it was seasoning or something but nobody else in the house is reacting. Just me and just the itching no tummy troubles. I have no idea where to go from here, I'm 40lbs over weight. My feet are tired of carrying this butt around!

Good Morning! This is driving me nuts so I hope someone can help me out. It seems like every time I start to lose weight I get a gluten reaction.

If I go low carb it's the third day of the diet. If I go low calorie I start itching three hours or so after a meal. Yesterday I even got a rash on my arm. I hadn't eaten in about 4 hours, I was working hard and just didn't have time to stop.

Anyhow, is gluten stored in our fat like other toxins? Has anyone else noticed this stupid reaction to dieting?

Thank you for your help, RA

Rashes, hives, constipation, depression, sore joints.

And I never actully eat gluten food, this is all just from accidental cross contamination.

Hope this info is helpful, RA

My mum over the last few days has had a bad break out of DH. She isn't sleeping at night due to the itchiness and the irritation of it, and as its quite hot at the moment it isn't helping either! She's having regular baths with ointment our doctor gave her and i've been washing the rash over with calamine lotion, but is there anything else i can do for her at the moment?

yep, use hydrocortisone cream instead of calomine and have her take benedryl. Get the clear, children's liquid if you can find it.

Some of our favorites - almond milk, almond butter, chocolate almond milk, Betty Crocker Gluten free cake mixes cooked with zucchini squash in it, rice cakes with jelly, gluten free pretzels, corn chips, bananas, apples, peaches, pears, apple sauce, peas, green beans, rice with brown sugar, nuts and raisins, rice with chicken broth....

Like the other posters said, once his tummy starts to heal so eating doesn't make him feel bad, he'll start eating. Just give him a protein (meat or nuts), a starch (rice or corn based) and a fruit at each meal. Oh, there are a lot of cold cereals that are gluten free like Fruity Pebbles, Rice Chex and Gorilla Munch

The Betty Crocker chocolate cake mix

with coconut milk instead of the milk and oil (for moisture), 1 cup of zucchini (for a less grainy, more sticky texture) and a little bit of cinnimon ( to tone down the cocoa powder taste).

This was better than regular, gluteny chocolate cake.

We used Betty Crocker's butter cream frosting, smashed pecans and a little bit of the cinnimon on top.

Soft foods, juices and benedryl make me feel better after a mistake. Corn is hard to digest, I would avoid that and go for things like eggs, bananas, apple sauce, green beans, checken breast. Hope this helps, RA

I lost count of the people who thought I couldn't have eggs because I was reacting to dairy! I finally asked one lady what kind of cow she gets her eggs from.

The worst one so far has been the five star restaurant that wanted me to go over several pages of cooking instructions and choose something I could have on my way into the dining room. They had promised me a gluten free menu a month in advance. I was furious. I was stuck on an island, that requires a boat ride to the mainland to get to a grocery store, with a bunch of clueless snobs. I was told point blank, "We prefer to do it our way." So at $50 a plate they served me dry gluten free noodles, chicken breast and salad FOR THREE DAYS. No surprise, the conference ended with gluten, benedryl, and a refund.

At one point they even served me a bowl of ice cream with a cookie on top! AHHHHHHH

The blood test for celiacs is unreliable. Lots of people with celiacs receive a negative test result. Have you been to an immunologist to be tested for food allergies (not just mold, grasses, trees, pollen and pets)?

When I was tested, I was positive for two of the gluten grains, dairy, soy, everything in the celery family and sweet potatoes. I would never have figured it out on my own.

My symptoms were - a week of bloating and constipation followed by horrible cramps and explosive diarrhea and frequent sinus infections. Another family member was dx'd by her Ob-gyn after frequent UTI's.

Hope this helps, RA