nettiebeads

Part of it is genetic - look at your parents and your grandmas. Where did they gain the weight? And after childbirth, I swear I'll never have a flat tummy again. And I was cleaning out my mother's apt and found pics of my in my h.s. days. Was I really that thin? Focus first on getting the gluten out and after your intestines have healed sufficiently, then see where you're at with your waistline.

Annette

My dr. thinks that the testing isn't as sensitive and reliable as they probably will be in the future. I never did have any testing done, other than the diet challenge, which is a viable dx tool. And your body is telling you you have severe problems with gluten, so cut it out. It's up to you to listen and take care of your body. I know the dr's get paid to, but for some when issues present themselves out of their scope of experience, they seem to just ignore it and send the pt somewhere else.

Hope you're feeling better,

Annette

Amsterdam was my 3rd ex's dream vacation. I'd like to see it, but not the cafe's you were at.

No, the diary you ingest isn't damaging your intestines. It's your body's reaction to gluten that does it. I was in the normal catagory of celiac (I think I just made that up) anyhow, after your villi heal, they will start to produce the lactic acid needed to digest diary. But I think it's very individualistic as to how much healing and how long it takes and how much diary you'll be able to tolerate afterwards. I cut out dairy for 3 months, then tried it, still had a little problem with it, but not the severe stomach cramps like before. I still don't eat as much of it as I used to, but when I do ingest diary, I'm fine. (Can't live w/o Blue Bunny ice cream)

Annette

Another question I have is what is the weather like in early April? Does it tend to be rainy or chilly still? I'm trying to figure out what kind of clothes to get. Right now I'm kind of in a stay-at-home-mom clothes rut. Lots of jeans and my husband's t-shirts. I have a few things that are nicer, but you know what I mean.

Nancy

Hmm I can't remember exactly, but I think it's too early for the "June gloom" You're right on the ocean and it's the Alaskan current right off shore keeping springtime cool in the morning, but you can expect 70's at least every afternoon. But too cold for swimming in the ocean. But if you head inland to the mtns you can expect 80's. If you can, make a side trip up to Julian in the Lagunas. It's a nice little ex-mining town turned tourist. And if you can't make both the San Diego Zoo and the Wild Animal Park, definitely go for the Wild Animal Park, IMO.

Annette

But please remember false negatives are common. Just in case it comes back neg. If it comes back pos,

well, then you have no more questions. But like Nini stated - it's how your body feels being gluten-free that's the best indicator of celiac or not.

Here is the wording from the biopsy:

Benign Duodenal Mucosa with increases lymphocytes in surface epithellium, no active duodenitis seen, villous blunting not identified (see note 1).

Other reuslts showed benign gastic and colonic mucusa.

Note 1: CD3 immunohistochemistry shows mild to moderate increase of lymphocytes into surface epithelium, suggesting early changes of sprue. Please correlate clinically.

Note from Dr. to assistant, attached ... "biopsy's from proximal small intestine were suggestive of celiac sprue." Please schedule f/u.

The whole thing is interesting and confusing. Fun, fun, fun.

Sounds like they caught it at the early early stages of damage. I would rule celiac in. But I'm not a professional dr, just been learning about this disease for the past 9 years.

I'll definitely have to check that out. I went to the link and browsed a little. Looks promising! Thanks!

Annette

Could very well be celiac. I was dx'd 9 yrs ago just by diet challenge - stopped eating gluten and then the D stopped. No bloodwork and no biopsy. The fact that you have cut out gluten in the past and felt better leads to two things - positive diet challenge (it IS a viable diagnostic tool) and it may skew the results of any testing. Oh, and the diary thingy. What happens when you develop celiac is that the villi get attacked by your own body (hence the autoimmune part of the disease) and are flattened. It is the tip of the villi that produce the lactaid needed to digest diary products and damaged villi cannot produce it, hence the diary intolerance. But the good news is that as soon as gluten is taken out of the diet, the body starts healing, the villi come back, and after about 3 to 6 months you can have dairy again, but maybe not in the amounts you used to eat. (that's how it was for me, anyhow)

What's your family history? The disease is genetic - lots of posters have had family members die of what could have very well been complications of untreated celiac. I strongly suspect that it was my mother that passed on the celiac gene(s) to me. I haven't had the genetic testing done yet, but plan on it when I have a little extra money.

Hope this helps some. At least you know we won't accuse you of making this stuff up.

Keep us posted.

Annette

I can see why you're confused, but the biopsy isn't the gold standard that it was thought to be. It sounds very much like you do have celiac, but since you've been gluten-free for two weeks, you'd have to go back on gluten for 6 weeks or more to have accurate test results. Your choice. But if the D has cleared up along with what is probably DH, then I'd opt for the gluten-free diet and let it go at that.

Ahh! Bully's Mex North - La Jolla brings back so many memories! Whenever I go out I try to schedule it during non-peak hours so then the staff has a little more breathing room to help. And let the staff know that you have a condition and need their help. Most of the time people are willing to help. Do you have the Triumph dining cards? Those have been a godsend for me sometimes. I keep mine in my purse at all times. And as for sticking out - don't worry about it. You can't help having a medical condition. It's how YOU deal with it that will leave an impression on others. When I've been out with others, I'll usually let them know my diet choices are limited since I have celiac and can't eat anything that has wheat. But I don't limit the choices of restaurants if there is a selection of salads I can eat. Better than nothing, and even though at times my stomach rebels at the thought of yet another salad, for the most part I'm along for the company, not the food.

Hope this helps. Relax and let them get to know you as a person with celiac. Hey, we all have our quirks!

Annette

Hmm, another link in my chain of "coincidences" that make me think my mother is where I got my celiac. She has spinal stenosis and a very pronounced dowagers hump - she used to be 5'10" but now has to look up to me - she's practically bent over in half and is in a wheelchair. How she's lived to 84 I don't know - except for being a plain ole' stubborn Swede, I can't think of any other reason.

Annette

Ok, I have posted that I went in for an upper endoscopy because my primary care and my GI thought I had an ulcer. Biopsy results come back, call from GI two weeks ago, you have celiac please schedule an appointment for follow-up and discussion of options. Went on gluten-free diet, thank you all for the help and suggestions.

Yesterday, I went in for the follow-up. I really need some sort of explaination here because this is the confusing part. I was told there is NO damage to the villi, that some sort of enzyme testing done on the biopsy revealed that I may have sprue. GI wants me to go back on a gluten diet for a week and then get blood work.

Now here is the question, what does this mean that I came up positive on this test but no damage to villi? I was under the impression this is something that is more a yes or no if the biopsy results reflect sprue or is there some way that test results show it but I do not have it?

Don't you just love it when the drs. backpedal? The real question is - How are you feeling on the gluten-free diet? Is your stomach better? Head, fatigue issues, outlook on life in general better? I was dx's w/o biopsy, but I know I have celiac from all the symptoms I get when I ingest gluten. Only you have direct access to what your body is telling you - listen to it.

Annette

My poops are irregular really inconsistent in terms of when i go, constipation, D, runny stools, rock like, pencil thin stools, clumpy, they all are really uncomfortable, not in the least releaving...is this normal for people with celiac disease? After i go, i feel really sick and uncomfortable in my lowel bowel/stomach too.

L

Mine are thin when I eat something that aggravates my diverticulosis. It also causes pains in the transferse part of my colon and I don't feel much relief after going. I have to stay away from popcorn and small seeds like blackberries and strawberries.

Don't know if that helps.

Annette

Or am I just wierd, again?

Hmm, that one has me wondering.

Anyone else diagnosed with out the biopsy?

Thanks in advance.

-Becca

Ooh, my kind of dr. If your body feels better withouth gluten, then you have ipso facto celiac. My dr. dx'd me w/o bloodwork or biopsy. It's called the diet challenge and is a very viable diagnostic tool. I'm glad you have a dr. that is taking into consideration everything you've been through and is paying attention to what your body is telling you. Try the diet challenge under your dr's direction. If you feel better, then continue. If not, then he may have to find other avenues to explore, but it sounds like he's on the right track.

Whoa! I sure hope you have really competenct drs. The only thing I can add is have you ever done the totally gluten free diet? Some sufferers here have reported success on a carb specific diet. I don't know the details of that one, but if you were to type diet in the search, you might find it. When I would get glutened, I found the best source of comfort was a heating pad. Basic, but it helps. Chamomile tea and ginger (like in ginger ale or let the soda go flat if you don't want the bubbles) and also peppermint are good for upset stomachs. I'm so sorry to hear of your health problems; I pray your doctors can start you on the road to good health.

Annette

I didn't lose at first, and didn't really gain until I went through a nasty divorce. Then the pounds piled on and stayed. It's been 5 years, but I finally got the last of the gluten out of my system and my energy has finally gotten back to a more normal range. It's been slow progress, but since I'm feeling better and doing more things, and finally able to workout on a more normal schedule, my body is toning up. Not much weight loss to write home about, but my clothes are looser. I'm not nearly as ravenously hungry as I was when I was ingesting gluten from my cold cereal every morning (darn malt) and my body is feeling satiated finally after a normal sized meal. I think it was a combination of my body craving nutrients and then overeating to satisfy the cravings, then my stomach getting used to the extra food. 49.5 lbs more to go.

I used to work at a grocery store. For a chain to make a 1% profit, all the stores in that chain have to make a 3% profit because of the high overhead and it's a labor intensive industry. You would think that with slim profit margins, stores would love to expand their gluten-free section, because that is a niche that has been growing at 19% or more each year as opposed to other sections that have a more or less flat growth. I haven't read a grocery industry mag for years, but I'm sure any time a store can expand just in one area and have a built in set of buyers, they would go for it. After all, there is always a sugar free, diabetic section in each store. We just the same, only not as well known or organized yet.

Annette

Looks safe. Does the label contain the universal disclaimer "processed in a facility that also processes wheat products?"

Gluten almost killed my daughter all I ask from any company is to be honest and truthful, you can add all the Gluten you want but when I ask tell me the truth. Mc Donalds let me give my child poison. Sorry for rambling on i was very upset by the news and feel so guilty for giving her those stupid french fries.

Thanks to who ever is reading, I needed to get that out

Ronnismom

Don't feel guilty! McDonald's LIED, misled and refused to tell the truth. NO ONE knew the real truth except them!! And now they tell us that they are interested in their customer's health and that's why they have listed wheat and milk used in their products. NO - they were interested in their bottom line and that's the real truth. So, vent away here where we understand your justifiable anger. No one can blame you Ronnismom, so please don't blame yourself.

Annette

Hi Squall,

Don't be too upset at yourself. It takes a long time to get this right. It will eventually become second nature, believe it or not!

Margarine can have gluten in it, you need to check the labels. I, personally, stay away from it altogether and use butter. As for mayonnaise - I have yet to find one that DOES have gluten in it.

Hope that helps!

Yvonne

Where would be the wheat in margarine? I use stick to keep mine separate from my hubby's tub o margarine. Mayo is egg based and I've never had a problem.

Hi

New to the whole gluten free thing, and i was at the healthfood store looking at bread mixes today. i actually DID buy one. it was advertised as "wheat & gluten free." i opened it up and there was a yeast packet inside. i thought yeast contained gluten? are there some yeasts that contain gluten? i used the yeast when i baked the bread, but is the bread still gluten free? please someone enlighten me! Thanks

Matt

Hi and welcome to the board. There is a term SILLY YAKS and I think we know who they are here...

Don't be embarassed about any questions here. As far as yeast being gluten free, it depends on the source. The yeast in your bread mix and sold for baking is safe. It's the nutritional yeast called brewer's yeast that is off limits. It is a by-product of beer making. So, eat happy!

Annette

Glad you're feeling better. Are you gluten-free? The fatigue is a major symptom of being glutened. My fatigue can last for over a week from one small cross-contamination. Feel free to ask any questions here - none to personal or embarassing!

Annette

I think this is not on unscrupulous but disgraceful for them to lie to people about potentially life threatening ingedients.

I was not one who ate at MacD's except occasionally for hash browns, that was before dx. They deserved to be sued on this because they totally premeditated to blatantly lie to people.

I am as disgusted with them as I am with Microsoft.

I have problems with why they need to add milk and wheat to anything. I make fries and never use milk, wheat, msg or other garbage on them.

Did you catch that McDonald's stance is that they do indeed care about their customers. The proof is that they are complying with the federal labeling laws and letting people know what allergens are in their products. I hope no one falls for that load of supreme BS!! No, they lied to millions for years about what was in their food to protect their bottom line. What a big bunch of selfish, shortsighted, insensitive........

Annette