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ConnieA84

Still Having Symptoms After 4 Months...is That Normal

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Dear all,

I was diagnosed with Celiac disease about 4 months ago and have been doing my best to stick to a gluten free diet. I have had a few bad days where I had something with wheat or malt in it without knowing and had some bad reactions. My symtoms are definatly better then they were 4 months ago, but still not normal. I am not sure if I just havent healed enough or if I am somehow contaminating my self. I live with my parents who are not gluten free so it can be difficult to avoid cross contamination. I am still new to the celiac world, how long does it normally take to eliminate symptoms??

My other questions is I have struggled with my weight, not a lot about 15-20 pounds over the past few years. My diet and exercise levels have not changed but over the past few years (before diagnosis) I seem to be gaining weight and unable to lose it. It has been 4 months on the gluten free diet and I cant seem to move the scale...I read an article about celiac disease and obesity and it basically said that if your intestines are really damaged then you don't obsorb nnutrients properly and so your body thinks your starving to death and in turn retains all the fat it can as a defence mechanism. Has anyone else read anything about this?? I am currently taking an ver the counter vitamin and iron pills but that's it. Maybe I need more vitamin suppliments??

If anyone is in a similar boat or has any advice I am all ears.

Thanks Connie

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What you've described doesn't sound unusual. It can take quite a while to heal and the healing can come in stages. And as you mentioned, we adjust to this lifestyle in stages so that can be a factor as well. Are you using cast iron or teflon pans that have had gluen in them? These can be a problem. Steel or other uncoated metal pans are safe to use for both gluten and gluten-free cooking, otherwise you need to have separate pans that are dedicated gluten-free. I have found that a powdered(others use liquid) multi-vitamin supplement works much better because it is more easily absorbed.

Weight problems can also be caused by imbalances in blood sugar and hormones as a result of stress on the body by undiagnosed celiac disease. Some people need to be tested for diabetes and adrenal fatigue.


Me: GLUTEN-FREE 7/06, multiple food allergies, T2 DIABETES DX 8/08, LADA-Latent Autoimmune Diabetes in Adults, Who knew food allergies could trigger an autoimmune attack on the pancreas?! 1/11 Re-DX T1 DM, pos. DQ2 Celiac gene test 9/11

Son: ADHD '06,

neg. CELIAC PANEL 5/07

ALLERGY: "positive" blood and skin tests to wheat, which triggers his eczema '08

ENTEROLAB testing: elevated Fecal Anti-tissue Transglutaminase IgA Dec. '08

Gluten-free-Feb. '09

other food allergies

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Hi Connie, Are you still using the same toaster that your family members use? It took me awhile to figure that one out, but when I did I went right to the store and bought me my own toaster and that really helped. I also found that I have to have my own spot on the counter which is to stay gluten free because if someone makes a sandwich there and it dosen't get cleaned properly (or any other food with gluten) I get contaminated. My toothpaste, shampoo, conditioner, lotion and make-up all had to change also. There are just so many things that it just takes trial and error and just letting your gut heal. Good luck!

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I have bought my own toster and I got rid of any wooden spoons or bowls, I'll check on the pots and pans maybe I should just buy new ones and only use them for my cooking. I never thought about toothpaste, make-up and other bathrooms stuff I will check that out thanks..Are most toothpastes gluten free??

Thanks for the advice i'll check into it.

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Yes, it does take time. Often more than four months it seems ... or those are the ones who post :rolleyes: It certainly took me longer. Some take a year or even two to get up to 100%. I don't know if I'm at 100% yet. I'll guess I'll wait and see if I continue to feel better as time goes on.

Have you tried a food diary? You may have another food intolerance. A common second one is to casein (milk protein); the one after that I would say is soy. I've certainly talked to folks who haven't completely improved until they eliminated those two also.

Be sure to check your hair gel. That's what got me ... and it says wheat right on the label!

Also don't take it for granted that certain sorts of foods would never contain gluten. They could well. If they say natural and/or artificial flavor, it could have gluten. Not too long ago I found out that two teas I liked had gluten :(


McDougall diet (low fat vegan) since 6/00

Gluten free since 1/6/07

Soy free and completely casein and egg free since 2/15/07

Yeast free, on and off, since 3/1/07 -- I can't notice any difference one way or the other

Enterolab results -- 2/15/07

Fecal Antigliladin IgA 140 (Normal Range <10 units)

Fecal Antitissue Transglutaminase IgA 50 (Normal Range <10 units)

Quantitative Microscopic Fecal Fat Score 517 (Normal Range <300 units)

Fecal anti-casein (cow's milk) IgA antibody 127 (Normal Range <10 units)

HLA-DQB1 Molecular analysis, Allele 1 0501

HLA-DQB1 Molecular analysis, Allele 2 06xx

Serologic equivalent: HLA-DQ 1,1 (subtype 5,6)

Fecal anti-ovalbumin (chicken egg) IgA antibody 11 (Normal range <10 units)

Fecal Anti-Saccharomyces cerevisiae (dietary yeast) IgA 11 (Normal range <10 units)

Fecal Anti-Soy IgA 119 (Normal Range < 10 units)

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I have bought my own toster and I got rid of any wooden spoons or bowls, I'll check on the pots and pans maybe I should just buy new ones and only use them for my cooking. I never thought about toothpaste, make-up and other bathrooms stuff I will check that out thanks..Are most toothpastes gluten free??

Thanks for the advice i'll check into it.

Hi Connie, I also am just newly diagnosed 3 months ago. I found that within 8 days of gluten freeI was feeling like a new person. I have had 2 situations with being what we celiacs call "glutened". I was told by a nutitionist that I could not share a toaster & she recommended a toaster oven, serves 2 purposes...toaster and oven......just food for thought. If I was you I would buy just a couple pans for yourself. I use crest and have not had a problem. As far as lotions or face creams I've been told and read that unless you have the skin condition associated with celiac you should be fine with any lotions, shampoo, makeup ect. because your not ingesting it. The best thing is to read everything you can. Get as many books as you can you'll feel better knowing the most you can. Good Luck!

Pam

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Connie, glad you are asking your question. I think that you have seen some improvement is a good confirmation. Some people don't see any improvement for months.

The weight issue seems to be individual, from my impression here. I started to lose weight after about 4 months or so, even eating starches which is unheard of for me. It has plateaued again now. I think you have to really watch what you eat gluten-free, as gluten-free items often have more sugar and less whole grain. What you read about this makes sense to me.

Motorboater, there is a lot of discussion about personal care products on this board. Many people are sensitive to using lotions and so forth because minor amounts can be ingested inadvertently. I know that when I stopped using my wheat containing soaps, shampoos, and make-up, there was another notch of improvement. I haven't retested at this point, as my healing process is slow.


4/2007 Positive IGA, TTG Enterolab results, with severe malabsorption: Two DQ2 celiac genes--highest possible risk.

gluten-free since 4/22/07; SF since 7/07; 3/08 & 7/08 high sugar levels in stool (i.e. cannot break down carbs) digestive enzymes for carbs didn't help; 7/18/08 started SCD as prescribed by my physician (MD).

10/2000 dx LYME disease; 2008 clinical dx CELIAC; Other: hypothyroid, allergies, dupuytrens, high mercury levels

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I think it likely that I was ingesting small amounts of my hair gel. Once I realized the wheat was in there, I started noticing how often I touched my hair, especially when it was wet. I realized that I just rinsed my fingers after I styled my hair, I didn't carefully scrub under the nails. (If a colander had hide gluten despite washing, why couldn't the stuff still be under and around one's nails? Gluten is a very sticky protein -- it is used for glue, after all.) My hair gets rained on ... I poof it with my fingers. (Did I carefully scrub my fingers afterwards? No.) I certainly noticed a lot of the times my fingers went into my mouth (flossing, taking pills, etc.), touched my mouth, or touched things that went into my mouth.

Actually, I think it highly unlikely that gluten would NOT have made it into my mouth.

There are a number of threads about folks being glutened by personal care items. One is what made me check the labels of my stuff ... and I'm VERY glad I did.

I wonder how many people who say that you don't have to worry about personal care items actually have gluten intolerance? The skepticism seems to originate with doctors who don't have the problem themselves.

Anyway, the fact is that there are nonglutened alternatives for anything. Why take the chance? I can style my hair without smearing it with wheat protein ... why wouldn't it be a good idea to do so?

Not trying to be overly argumentative ... It's just I felt noticeably better once I switched products and thought it important to share my experience.


McDougall diet (low fat vegan) since 6/00

Gluten free since 1/6/07

Soy free and completely casein and egg free since 2/15/07

Yeast free, on and off, since 3/1/07 -- I can't notice any difference one way or the other

Enterolab results -- 2/15/07

Fecal Antigliladin IgA 140 (Normal Range <10 units)

Fecal Antitissue Transglutaminase IgA 50 (Normal Range <10 units)

Quantitative Microscopic Fecal Fat Score 517 (Normal Range <300 units)

Fecal anti-casein (cow's milk) IgA antibody 127 (Normal Range <10 units)

HLA-DQB1 Molecular analysis, Allele 1 0501

HLA-DQB1 Molecular analysis, Allele 2 06xx

Serologic equivalent: HLA-DQ 1,1 (subtype 5,6)

Fecal anti-ovalbumin (chicken egg) IgA antibody 11 (Normal range <10 units)

Fecal Anti-Saccharomyces cerevisiae (dietary yeast) IgA 11 (Normal range <10 units)

Fecal Anti-Soy IgA 119 (Normal Range < 10 units)

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Hi ALL, me again!

19 months (approx) into this - I still mainly have just DH but when I get badly glutened accidentally I'm now getting the diarhea and gas (a recent development, when I KNOW I've been glutened - like when I found out that IHOP puts pancake batter in their scrambled eggs as well as omlettes - 2 hours after eating there).

As a test of the personal care product issue I eliminated all items containing gluten (there weren't that many in what I use). I didn't get any better or worse. A couple of months later when I went back to those few products I didn't see any problems.

LIPSTICK is a completely different thing - that I check carefully and don't use very much anyway.

So, I don't worry about the personal care items for hair (don't use gel or mousse or anything), lotions (use lots of those), makeup (except lipstick), toothpaste (I think most are gluten-free anyway - except the "natural ones" like Tom's of Maine), mouthwash, etc.

Everyone is different and everyone has different sensitivities and thresholds, and it is really really hard for people with DH to figure out where the gluten came from since it is such a delayed reaction.

I recommend everyone try everything to improve and then settle on what works for them to be as 100% as they can be!


Franceen

Diagnosed DH by Allergist via gluten-free Diet Success

Gluten-free since Dec 2005

Gluten-free works so why keep getting tests?

Neg skin biopsy & Neg bloodwork after gluten-free for 3 months

No Endoscopy - need to eat gluten for good test & won't do it

No other Allergies or major ailments!

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