bincongo

I notice that when I use (or eat) products with gluten, my skin breaks out in pimples. I need to find some skincare products (ie: facial soap, rinse/toner, moisturizer). I don't want to just buy something off the shelf. I want to actually talk with a person who knows about skin so they can look at my skin and see what I need (ie: heavier exfoliation, less exfoliation, oily skin stuff, sensitive skin stuff, etc). I would just go to the Clinique counter, but I wonder if that's gluten free. So, I'm wondering - do you know of any skincare lines from department stores (like Clinique, etc) that are gluten-free?

Good question and I don't have all the answers. I would think Clinique could tell you what kind of skin you have but I would not count on them being gluten free and people who work the counters don't usually know. Allergy tested does not mean gluten free. I used a lot of Estee Lauder and had to e-mail them to get a partial list of what was gluten free. I found out that many of the products I used had wheat in them. I would e-mail or call whatever company you are interested in. Sometimes they ask you to name the product because they don't actually have a gluten free list.

Just be aware, Reese's has a new candy bar and it is not gluten free. It is packaged much the same as the Reese's peanut butter cups, same color and packaging but it has a different shape. I love the fact that Reese's regular cups are gluten free but this new one is not.

Remember: one article isn't enough to create clinical guidelines. I found the article you were talking about. They only looked at 300 patients. Celiac is so different between people that I would wait until you see more studies before jumping to conclusions about yourself.

The key finding from this article is that there may be some usefulness to getting further biopsies to track recovery in adults with Celiac Disease.

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The answer is that although Celiac predisposes to small bowel cancer and lymphoma, it does NOT predispose to colorectal cancer! YAY! (Didn't want to scare you by leaving the punchline until later.)

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This one best addressed the lymphoma link. Basically what it says is that some people with refractory Celiac have such messed-up T-cells that they develop into a T-cell lymphoma. So this article basically linked the majority of the lymphoma risk to the refractory Celiac population.

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The study of biopsy location seems to be stuck in the "Where should we biopsy?" stage. So I don't think anybody has done anything to figure out what damage where causes what outcomes. This research is all still very much in the baby stages, from what I can tell. However, interestingly enough, making sure there are duodenal bulb biopsies seems to be helpful for getting accurate diagnoses, so hopefully there will be an easier time getting answers for Celiac patients in the future.

Thanks for the information. I read somewhere that only 5% of Celiac's develop the more serious things like cancer. I figure it must be in the group of 34% whose intestines don't improve. So if I am unlucky enough to be in that group then I did the math and that gives me a 20% chance of not recovering and/or getting cancer. I would guess that 5% is the refractory Celiac population. I am starting out on the wrong foot by having a bad biopsy but what are my choices. I have to be gluten free and 80% odds are better than nothing. I have learned that I will ask for a repeat biopsy. I am not sure how often I should have it done. My Gasto doctor gave me the impression I didn't ever need to come back unless some new problem developed.

Sorry to say today I had a bad experience at Jason's in Huntsville, Alabama. I had gone there before and ordered a gluten free chicken salad and the first time I went it bothered me that they cut up the chicken on the bar where they had all the other ingredients so this time I watched them. They were making lots of sandwich's and cutting them right on the bar and then cut up my chicken on the same prep bar. When they handed me the salad I asked them to make it over and not use the prep bar to cut the chicken. The "manager" who was up front handed the new salad to me and said - We can't promise we are gluten free.

If they are cutting up bread, and you could actually see the bread crumbs, then they can't even call it a gluten free menu. I was so upset.

Wow, working in her kitchen...are you bringing your own cooking things....cutting board, mixers, sifters, etc.?At least the things that are hardest to make sure are perfectly clean? Can you make any of the food in your kitchen & bring it frozen? That's what I'm going to try to do at my family's Thanksgiving. My father is making the turkey as he does every year, but I'm worried he'll "forget" that I've got a gluten intolerance and put flour on it somehow; he's done that before. I'm going to make gluten-free bread for the stuffing, and watch him like a hawk I'm also going to make the pumpkin pie, so that's another reason I need a perfect crust; my brother and father are both scientists and have pie making down to a fine science, so it'll have to pass their judgement.

I'm excited today to try the Vanilla Butter Layer Cake from Annalise's book. My co-worker's mom is also gluten intolerant, so I told her to come over and we'd bake her mom a cake for her birthday. Hope it turns out as well as the other two recipes!

I know it worries me. I am driving so I guess I could bring some of my own things. You can't get a mixer clean? If you have a good pie crust recipe let me know. I make pumpkin pie and pecan pie every year. I haven't decided what I will do about the stuffing.

I read an article on Celiac.com, sorry I can't remember the name, it said that the intestinal recovery rate was only 34% at 2 years and 66% at 5 years. Three factors influence this rate, those who did not follow the gluten free diet well, those with diarrhea and weight loss and those who showed total villous atrophy on biopsy. I had total villous atrophy on my biopsy so where does that leave me? Some have said it depends on where they took the biopsy. I guess my question is if they did this study did they look at the entire intestine for damage and has anyone done a study on damage done based on where they took the biopsy? If you can point me to studies I would like more information. I know Celiac's feel better on the diet but if only 66% have intestional improvement doesn't that mean more cancer risk for those who don't improve?

I found the article - Mucosal Recovery and Mortality in Adults With Celiac Disease After Treatment With a Gluten-Free Diet

Thanks for all the replys, thats what I need - real cooks who like to cook. I too was known for my pies and haven't baked anything since becoming a Celiac. I have done a few cookies. I have a wish list on Amazon so my kids can order from it. Today I ordered Robert's book and Cooking for Dummies. My daughter is having a baby around Thanksgiving and I will be living with her and her husband for several weeks to help out. I will do the cooking so I just couldn't wait to get a couple cookbooks. When I told my daughter I would be cooking Thanksgiving gluten free she asked me to try the recipes first. She is skeptical about gluten free tasting good. Now my only problem will be working in her kitchen and feeding her 18 month old and not getting CC myself. I am looking forward to it though.

I would go ahead with the D3 for a bit, have your doctor check your levels after a couple months and if the levels are then normal you could cut the D3 back to every other day or three days. You don't want to little D3 but you also don't want too much. If your having neuro symptoms you would want to take a sublingual B12 until you are healed fully gut wise. If you intestines are compromised you won't be able to absorb B12 from a regular swallowed tablet. That is the reason for the sublingual. The amount of B12 will seem very high but B12 is a water soluable vitamin and any excess your body can't use will simply be excreted. The sublingual dissolves under your tongue and gets into the blood stream bypassing the damage to the intestines. After you have healed then you can switch to the regular swallowed variety of the B12.

Sounds like a plan. I had sublingual of B6 and B12 together in one tablet but I don't want to add more B6 since I was high. I had taken that before my blood work. I can look for sublingual for only B12 and I will add the D3 for awhile.

Thanks everyone for all your input

I am going have my doc do another round of blood work , I want to know want my magnesium,B 12 and vit D levels are now ,,I also am going to ask her to prescribe physical therapy for my back/spine so i can be sure i am doing the correct exercise for my spine

I am leaning toward putting off meds for the osteoporosis until I have a chance to see what i can do with exercise and supplements

Thanks guys

I have taken Boniva for several years. I don't think I have done any harm by doing it but I did not know I was Celiac until this July. My DEXA scan was not improving with Boniva and calcium but not getting worse either. Now I believe it was maybe do to problems with absorbtion that Celiac's have. If it were me I wouldn't be afraid to take Boniva but I would wait until my gut has a chance to heal. It is true that exercise is very good for the bones.

I love cookbooks and now I need Gluten free cookbooks. I am making a wish list for Christmas so my kids can buy for me. I brought one and was disappointed so I would rather ask your opinions based on the ones you have tryed.

I would discribe my cooking style as Paula Dean but gluten free now. I don't care if things are low fat, healthy, lactose free or anything like that. I just want good tasting food, butter, sugar and all those sinful things.

Have you seen the crockpot blog? Open Original Shared Link

I think almost everything she makes seems "normal" and it's all gluten free. I make "normal" stuff all the time like soup, stew, salad, tacos, stirfry, grilled meat and steamed veggies, etc. There's tons of food that is just naturally gltuen free (or easy to leave out the gluten without noticing). No need to feed them gluten replacements (which can be expensive anyway) like gluten free bread for sandwiches. Just don't do sandwiches. You could do quelladillas with corn tortillas instead if you want handheld food. And I wouldn't even mention what you made is "gltuen free" unless they ask where is the crackers/bread/pasta.

That's a cool site. I put the cookbook on my wish list for Christmas. It even has pictures of what ingredients to use.

If you are taking a vitamin with folate that can make the B12 reading higher than it really is on a blood test in addition many of the ranges for B12 are actually too low. If you level was below 500 you dhould be supplementing. Also it can take a long time after your body stops being able to utilize B12 before the blood tests will drop enough for you to show as deficient. In addition celiac damage can keep us from absorbing B12 through regular supplements and our food. Since you are showing neuro signs it isn't going to hurt to take a sublingual B12 for a bit to see if it helps. With osteopenia it is a good idea to supplement D3 and calcium for a bit and make sure you are doing some weight bearing excercise.

My B12 level was 583. My mulivitamin contains 50mcg of B12 and 400mcg of Folic acid and 800IU of plain D. I have picked up a bottle of Vitamin D3 2000IU in each softgel and Vitamin B12 250mcg in a tablet. Would you suggest I use the extra D3 and B12?

I had a good experience at Jason's too. I ordered a salad and added chicken to it. I was a little concerned when they took the chicken from the salad bar prep line and cut it up on the bar there. I didn't have any problems with it and it tasted very good but I still have my concerns about using the chicken and next time I will ask if it should be done in a different way.

Given that you're still recovering from the Celiac itself, your doc may be trying to avoid making you take a bunch of pills because some of this will heal itself on its own. Maybe she's waiting to see where things are in 4 months before making any judgments about what you're actually lacking for real and what's just a consequence of Celiac (which will go away as you heal! YAY!)

If you're taking your multi, you can add a single calcium pill to it and you'd be getting "extra" and hopefully enough. After 4 months, you could find out if that's sufficient when you go to see your doc.

If you're not menstruating anymore, ask your doc after the 4 months to see if you're taking too much iron. You won't be losing it as regularly if you don't have a period.

You know that really makes sense. Now I have about 6 bottles of extra vitamin's and minerals so my plan is to use them up since I am a little deficient for now and when they are gone I will go back to the multivitamin and calcium only. It won't affect my blood work 4 months from now.

With healthy thyroid function our bodies convert T4 to T3 as needed. A normal thyroid will make 80% T4 and 20% T3. So most docs will prescribe a T4 supplement or levothyroxine drug, like Synthroid, Levoxyl, Levothroid. Because I had years of undiagnosed celiac damage to my intestines plus 4 years of intestinal infections, my doc prescribed Levoxyl which is more easily absorbed by people with malabsorption problems.

If your T3 has not increased to a normal level after a year of levothyroxine (T4 supplement), you may need a T3 supplement like Cytomel (liothyronine) in addition to the Levo. Another option is a synthetic T4-T3 combo drug known as Liotrix or Thyrolar (brand name). I don't know why your doc would switch you to Synthroid, which is another T4 supplement, if the Levothyroxine (generic?) didn't work to increase your T3 levels. Did you have continued hypothyroid symptoms despite (while) taking the Levo? Sometimes one drug will simply work better than another (as I mentioned about Levoxyl for people with intestinal malabsorption problems). Did you ask your doc why he wanted to switch you to Synthroid?

Thanks, I was looking for this information. My doctor didn't say anything except to repeat the blood work. I wouldn't have even gotten a free T3 and T4 done if it had not been for my sister's suggestion. My sister doesn't have Celiac so she doesn't have to be concerned with malabsorbtion. My sister goes to a specialist for her Hashimoto's and autoimmune problems and he doesn't believe in using Levothyoxine. He puts her only on Synthroid so that is why I asked for it. I like my doctor but she may not know how to treat my thyroid problems.

I do feel a lot better after a year of taking Levothyroxine but I am not sure how "good" I should feel. I no longer have to take naps everyday. I still have problems getting to sleep at night. My concern was with possible absorbtion issues. I have had periods of time when I am just "wired" but that hasn't happened in a few weeks. I don't have a diagnosis of Hashimoto's but suspect it.

At this point would it be better to just add a T3 suppliment for awhile or ask to change to Levoxyl? I guess if it is malabsorbtion it might be better to go with the Levoxyl.

Ok someone directed me to a Web site called "Thyroid Mistreatment". I tryed reading it but right now it just put my mind in overload. My sister who has Hashimoto's told me to get Free T3 and Free T4 done in addition to the TSH. I am on Levothyroxine and have been on for a year. So my TSH is 2.58 in a scale of 0.27-4.20. My Free T3 is 2.7 on a scale of 2.6 to 4.4 so it is low. My free T4 is 1.12 on a scale of 0.8 to 1.70. Is it simple enough to just ask what I should be taking for the T3 in addition to Levothyroxine? Actually my doctor decided I could change to Synthyoid but I haven't yet.

Well my husband won't go completely gluten free so he buys his own bread. If it were me I would go simple. Go to the deli and ask them to clean their machine and get sliced Boar's Head meats and cheeses and have sandwiches. Get gluten free chips, there are a lot out there. You can have gluten free bread and the others can do there own thing. Oh, I also get mayonnaise in the squeeze bottle and butter and mustard in squeeze bottle's so there is no CC.

I'm also a recent diagnosis. My doc told me to just take a multivitamin with an additional 400 mcg of folic acid and a couple Tums for calcium (I also have a calcium supplement with Vitamin D included). I'm actually doubling the folic acid (with the doc's approval) in case of accidental pregnancy.

For you, it really sounds like the worst part right now is your almost-anemia. Did you talk to your doc about the lab results? Taking one iron pill per day is a good way to start, and remember that the iron pills can constipate you and give you gas (so if you get symptoms, it doesn't necessarily mean you got glutened - although meds and vitamins can have gluten, so check the ingredients carefully!)

How long have you been osteopenic? Taking one calcium supplement per day as a start and doing weight-bearing exercise (walking is the absolute best) will help to build up your bone density. If you've had a DEXA scan in the past, I'm sure you're scheduled for another one to monitor your bones.

Check with the doc about the lab results, but it really sounds like you're doing well overall! B12 is one of the vitamins that's stored in the liver long-term, so don't worry too much about it if you have enough of it. A person NORMALLY has a 3-year supply of B12 stored in the liver (with Celiac for three years, though, you could have had malabsorption and be running low so I'm not trying to tell you to NOT take it).

So ... start with replacing the B1, which was low-normal, and the iron and calcium, which we know are low too. Usually if you take in too much of a B vitamin you just pee out the excess, so it should be OK to take the multivitamin that you have. Add on an iron supplement to that and also some calcium and make sure you're walking.

My DEXA scan last year showed I wasn't improving even with calcium and Boniva but it is no wonder because I didn't know I was a Celiac. I think I will take your advice. I will take the multivitamin instead of extra B12 and I will add extra iron. I was told you should take B12 and iron together. I do take calcium with vitamin D but I can't remember how much I should be taking per day. I have been osteopenic for about 6 years. I will also add a pill of Folic acid and B1.My doctor didn't mention my anemia, maybe because it was 0.5 away from being abnormal so it didn't show up as a red flag. She plans to recheck my labs in 4 months but did not give any advice on what suppliments to take. I asked for a copy of my labs so I could look them over myself.

I am confused. My lab tests show I am almost anemic, have low WBC, low MCHC. I am in normal range on B1 but close to being low. My B6 was high, vitamin D was normal. My B12 and calcium were normal. I am trying to figure out what Vitamins and Minerals to take. My Centrum Silver says it has 833% of daily requirement of Vitamin B12, does that really mean anything to a Celiac?

I went to my health food store and picked up Vitamin B1 100mg, Folic acid 400mcg, Gentle Iron 25mg and Vitamin B12 250 mcg all made by Solgar. I am trying to cut out the vitamin B6 by separating it from the others but of course my multivitamin has B6 5mg which is listed at 250% DV. I don't know if I should take the multivitamin and just go with the separate ones. I am also taking Magnesium.

As a side line, I think I am having neuro problems, both my legs are having some pain and numbness. No tingling of feet and hands like some people report. This neuro symptom seems to come and go. I also have osteopenia and wonder how much Calcium to take.

I have only been a diagnosed Celiac for 3 months now and these are recent lab tests after finding out I was a Celiac.

I can't vote yet - to young a Celiac, nothing else young about me. How long will you be having the vote and will you post the results?

I also had low WBC and MCHC results on my last blood tests. Both of those results could mean anemia which causes fatigue and sleep problems. My doc suggested I take more Vitamin B12 and folate. Deficiencies of those could lower WBC. I'm eating more iron rich foods (because I don't tolerate iron supplements) to raise my MCHC.

I've taken magnesium supplements for years to cope with chronic constipation problems. Many newly diagnosed celiacs have magnesium deficiencies, because the celiac damaged intestines don't absorb enough magnesium from food. I also had low stomach acid production, which prevents adequate magnesium digestion in the stomach. Too much magnesium will cause diarrhea, which will tell you to take less magnesium. If you struggle with constipation, you probably need a lot of magnesium. Did the thyroid supplements help resolve your constipation problem? I just started Levoxyl 3 weeks ago and hoped that would improve my regularity.

In response to burdee - I am not sure where to go from here with Synthroid. Maybe I should have left well enough alone. If I were sensitive to sugar I would be in big trouble with what I eat so no problem there. I am a little concerned about my WBC and MCHC since I think this is the first time it came up low but I will take a mulivitamin and it sounds like several people agree I should continue to suppliment B12. It would be interesting if my sleep problems were also related to anemia.

As far as the thyroid supplements helping my constipation I am not sure. My thyroid problem was discovered before my Celiac and my constipation has gotten worse since I have been gluten free.

First, the tests for B12 are known to be inaccurate, and the serum level does not represent intracellular levels. Also, the level which is considered "normal" depends on who you ask. And in Japan, the recognized minimum level is quite a bit higher than in the US. Vitamin B12 is necessary for the production of both serotonin and melatonin, as well as a number of other things, and therefore is a factor in the regulation of sleep/wake cycles. I can tell you that I always had trouble sleeping, but since taking B12, I've had no trouble sleeping, and awaken much more refreshed and can get out of bed far more quickly than I ever could before. I find that I sleep much more deeply as well. Additionally, since there is no known level of overdose for B12, you can safely try a supplement to see how you feel. I'd recommend the 5mg methylcobalamin sublingual tablet from Source Naturals, taken about an hour before bedtime.

I'm not sure what the meaning of elevated B6 might be, but I suspect it may mean something more than just having taken supplements. I suppose you could do some searches on it.

bincongo reply ---- I was taking a suppliment that had both B6 and B12 together. I will try to find the one you suggested but take only B12. I do take Melatonin at night.

may i ask you what your TSH & T4 numbers were BEFORE u got on meds???

i need to retest my thyroid. havent tested since 2006- and back then my TSH was around 4.50 ???

I don't know what my TSH was. That was my pre Celiac days and I wasn't concerned about keeping a copy of my lab results for myself. Actually I just realized that they did give me two lab results. The TSH of 1.27 and T4 of 7.06 was from December of last year after taking meds for 3 months. The most recent labs are TSH of 2.58 and Free T4 of 1.12. I am not sure what that means.

Are you sensitive to dairy? Many newly diagnosed celiacs cannot digest lactose, because their intestinal villae have not yet healed. If you cannot tolerate lactose, you may not tolerate Synthroid, which includes Lactose Monohydrate in its 'inert ingredients'. However, a compounding pharmacist can prepare Synthroid without that lactose ingredient, if you really need that specific thyroid supplement.

I am sensitive to lactose. I get my Synthroid by mail so I guess I should call them. Does Levothyroxine have lactose in it too? My sister has Hashimoto's and her specialist doesn't beleive in generic so I thought I should switch too but my sister isn't Celiac or lactose sensitive.

I posted this on another forum but it is more appropriate here.

I got my labs back and I just wanted to run some things by some of the smart people on this forum. My doctor wasn't concerned about any of it. She will retest me in 4 months. I know I am a new Celiac so my IgG was 102 and my IgA 11.1, Reticulin Abs - positive 1:20, Endomysial Abs - negative.

I also had a few other things tested. I had taken supplements up until about a week before my labs and then decided I wanted to know what my body was doing without supplements so I quit. My vitamin D was normal and so was my B12 but my B6 was elevated 70, in a range of 5-50. I forgot to ask for a magnesium test. I am close to being anemic but not out of range. My WBC is low 3.74, with MCHC of 31.7 and Neutrophils of 1.99.

I have stopped taking any vitamin B's but I am still taking Magnesium Citrate. I have a problem with constipation and I feel it helps but wondering if there is any danger in doing so. I continue to have problems with sleep but don't know if it is related. I take Levothyroxine but will be switching to Synthroid non generic. My T4 was 7.06 and TSH 1.27 on meds.

All in all I came out better than I expected so maybe my Celiac was caught early but I still would like some advice.

Dx Celiac July 2010 by Endoscopy biopsy- had Endoscopy for another reason, not for possible Celiac

Hypothyroid Dx 2009.