Cross Contamination

[Aimee D.]

I have recently been diagnosed with celiacs (2 1/2 months ago) and I have not seen any drastic improvements on the way I feel. I think I am cross contaminating myself with the things that I feed my 2 yr old. We are always so close and he loves to touch everything on my face and give me kisses. I love this of coarse and want him to be close. I am not sure how to stop this from happening and I am so frustrated and tired. I have been looking so forward to being more energetic and having less headaches, but its just not happining, and I am really trying hard. I've reduced my diet to gluten-free tuna and gluten-free mayo (only I use), gluten-free peanut butter, fish fillets (clean pan, cooked in olive oil), crab legs, salad w/ gluten-free dressing, diet red bull, orange juice and water. I also take supplements that are labled hypo allergenic w/ no wheat or gluten. I'm pretty sure these foods do not contain gluten and I don't mind only eating them because I'm not that hungry anyway. I also only use gluten free shampoo, cleansing products moisturizers and make-up. I have checked all of it, or ordered it special off the internet.

I am not sure it is wise to not feed my son gluten, but I might have to go that route. If there is any insight or suggestions I could really use some help.

Thanks

[happygirl]

Hey Aimee,

Welcome to the board! We are happy you have found us! It is a great resource and I hope it provides you with education and support.

Let's see--first, how were you diagnosed with Celiac Disease (Celiac, without the "s")? Through bloodwork, biopsy, or both? I noticed in your signature that you have diabetes, which is highly correlated with Celiac https://www.celiac.com/st_prod.html?p_prodid=1405. What types of symptoms do you have that lead you/your doctor to determine you have Celiac---and what symptoms do you currently have that are not going away? How sick were/are you? (Just trying to get a little information so we can help)

But, without knowing your circumstances, there are a couple standard things. Since you have *only* been gluten free for 2.5 months (although it might seem like a lifetime---I understand!), your body is very potentially still healing. It is a process to start to feel better---for many, it can still take a few months or longer, even though they are strictly gluten free. It sounds like you are very thorough with your ingredients and most areas of cross contamination. However, I will say that I would not be comfortable with the things your sweet son does. I have a niece your son's age, and she must finish her meal, wash her hands, and then we resume playtime. I can't say that it is your *only* problem, but it is a risk for contamination-you are correct. Doesn't mean that it will get into your system every time, but .... its something you'll have to decide. Have you spoken to your doctor about this? Do you have a doctor that is knowledgable about Celiac and educated about it?

By the way, putting your son on a gluten free diet is not harmful, if you choose to do that. Speaking of that, it is recommended by Celiac experts that all first degree relatives are tested for Celiac. Although he is rather young and testing is not as reliable for children under 2, it would be advisable in the future (and, if it is negative, it still needs to be run periodically throughout his life, even with no symptoms).

Good luck and I hope you start to improve. Let us know what we can do to help!

Laua

[Aimee D.]

I have recently been diagnosed with celiacs (2 1/2 months ago) and I have not seen any drastic improvements on the way I feel. I think I am cross contaminating myself with the things that I feed my 2 yr old. We are always so close and he loves to touch everything on my face and give me kisses. I love this of coarse and want him to be close. I am not sure how to stop this from happening and I am so frustrated and tired. I have been looking so forward to being more energetic and having less headaches, but its just not happining, and I am really trying hard. I've reduced my diet to gluten-free tuna and gluten-free mayo (only I use), gluten-free peanut butter, fish fillets (clean pan, cooked in olive oil), crab legs, salad w/ gluten-free dressing, diet red bull, orange juice and water. I also take supplements that are labled hypo allergenic w/ no wheat or gluten. I'm pretty sure these foods do not contain gluten and I don't mind only eating them because I'm not that hungry anyway. I also only use gluten free shampoo, cleansing products moisturizers and make-up. I have checked all of it, or ordered it special off the internet.

I am not sure it is wise to not feed my son gluten, but I might have to go that route. If there is any insight or suggestions I could really use some help.

Thanks

Thank you, OOPS... sorry for the misspell!

I had both, positive blood work and a biopsy that showed spru in my stomach.

After I gave birth to my 2nd son I breast fed him for about 6 mo. and after that I kept expecting to get over the side effects of the pregnancy and the breast feeding, but I just kept feeling nauseous and tired. My husband and I had just moved to Alaska via the Air Force, so I got aquainted with my general physician who quickley refered me to an endocrinologists off base. I complained about the stomache discomfort to him and he asked if I had ever been tested for celiac disease. I told him not that I was aware of, I really didn't even know what he was talking about. He is fresh from India and has a strong accent. Three months later when I revisited him he told me the test he ran showed just slightly elevated antibody levels, but he thought I should get a referal to a GI just to make sure I didn't have celiac disease. I still was not sure what he was talking about. In the meantime I had gone for a dental checkup because I knew I needed to have a cavity filled that a dentist had found prior to our move. I was quickley side tracked by extensive and excessive ongoing dental work. At that time I had 12 unfilled cavities and needed 1 root canal. (Just one year later I have had a total of eight root canals and still need work.) I still had not researched anything on celiac disease, and revisited the endocrinologist for more routine bloodwork at which time he still persisted I check into having my stomache looked at. So I went to the general physician and requested a GI DR. and at that time I Had a constant headache that had not gone away for about three months straight. (I thought this was because of the dental work, turns out it was celiac disease) I went to a chiropractor because I was having hip, back and neck pain prior to the biopsy and wrote on the info sheet that I had celiac disease. The chiropractor happened to be well versed on celiac disease and diabetes. He had written a paper on celiac disease while he was in college. He explained to me what I would need to do and where to get info from the internet. I tried it for about 2 days and then decided I would make that appointment and ask for the biopsy! It took about 3 more months to get the test and the results and when the GI called me with the results all I could do was cry.

From that point on I have been on my own with this and it has been a lot of trial and error, and a lot of mistakes. I have gotten tons of ideas and info from this site. I know for a fact that I glutened myself last Tuesday when I ate a mixed bag of nuts and raisins w/ out reading the ingredients. So then I was so frustrated and I knew I had already blown it, so I went out for chinese w/ my husband and enjoyed everything gluten I could find, including beer. I didn't feel bad the next day or so, but now I'm very irritable and edgy, I want to bite everybodies head off and I cry lots and I have a bad headache. This could be from lack of sunshine, but I'm usually a fairly stable person in general.

[ravenwoodglass]

Hello and welcome. I just wanted to address the issue of making your home gluten free. It is not going to be harmful at all to make gluten off limits in your home.

Your DS is not more likely to become celiac if you do this, it will however make it obvious if he needs to be on the diet when he is out and comsuming gluten. This is not a bad thing. There is a good chance that he has also got the genes for celiac but keeping him gluten free at home is not going to cause it.

I wish I had known early on, it took over 15 years for me to be diagnosed and the damage that was done to my children because they never looked for it was substantial. That damage included growth stunting and emotional and learning problems. If I could go back in time and know what I do now I would never allow this toxin into my or my childrens lives. Even if they had only been gluten-free at home before they went to school things would have been very different.

My son had gluten shoved down his throat from the time he was 6 months old, but the fact he was only 12 lbs at a year didn't concern the doctors. I would not hesitate to reccommend strongly that you make your home gluten free. You may not know your son needs to be also until it is too late.

[Jestgar]

Hi Aimee,

I agree with making your house gluten free. You can use this as an opportunity to teach your kids about the value of reading labels and understanding what goes into their bodies. You can explain to your kids about chemicals and additives and how some foods make mommy sick so she tries to not eat foods that aren't healthy, and she never eats the foods that make her sick.

If they grow up understanding how food affects health (even if they never develop Celiac), they'll be healthier people their whole lives.

[happygirl]

I had both, positive blood work and a biopsy that showed spru in my stomach.

Aimee: Celiac is diagnosed through bloodwork/biopsy...however, Celiac damage is shown in your small intestine (where the villi are flattened due to Celiac- 'villous atrophy'), not your stomach. You could have irritation or other issues in your stomach, but damage to due Celiac is definitively found in your small intestine.

It sounds like you have gone through a lot....I am impressed that your doctor mentioned Celiac so "soon"-often, it takes a long time/never! I am happy that you found an answer, and now have found this board. I wish that there was something that I could do to make this easier. It sounds like you are going through a lot. It is hard to deal with this, plus the normal stresses of day to day life.

Given this new information (about eating gluten last week), basically all of my post before is not quite as relevant. If you have only been on the gluten free diet, and have eaten a massive amount of gluten in the past week: there is no reason to see any results, basically. Once you have screwed up: take a deep breath, and remember that we all make mistakes. HONESTLY. We really and truly all do. But, eating more gluten makes it exponentially worse. Any gluten is bad, but eating it in that amount is really bad ! Even if you are not seeing "overt" symptoms, since you are a biopsy confirmed Celiac, it means that you will have intestinal damage when you eat gluten, even if you do not feel anything. (There are many cases of completely asymptomatic Celiacs, who have raging damage to their intestines). So, it will take you longer to recover, having eaten a massive amount of gluten plus the other stuff, than having just made the one mistake. Given the fact that you were "only" on the gluten-free free diet for about 2 months at that point....your body really has not had time to heal and adjust to this, to start re-absorbing nutrients correctly, etc. Studies have shown that tiny, tiny amounts of gluten can do damage (like, crumbs worth!), which is why maintaining a strict gluten free (not gluten lite!) diet is important. Tiny amounts of gluten can turn "on" our autoimmune system, and our goal is to stop turning it on, by staying gluten free.

Just so you know, there are specialty gluten free beers, including one that was just introduced in December----a more mainstream one, by Anheuiser-Busch called "Red Bridge." It might be worth it for you to find and try, so you have a good substitute. I haven't tried it yet, but there is a thread about it on here. Also, for Chinese food---I know making it at home is not exactly the "same" (trust me, I know!) as eating out, but there are gluten free soy sauces to use at home. La Choy makes one, as well as San-J (they have a regular and low-sodium one. Be careful to get the wheat-free one; they also make gluten-filled ones!)

By the way---check out the book listed in my signature. Open Original Shared Link is the website of the author's Celiac Clinic at Columbia University). It is a comprehensive guide that is research based, and recent (2006). It covers what Celiac does to our bodies, as well as related disorders (like diabetes).

I hope that you continue to find this board a place of support and information! We are here to help get you through the learning curve of the gluten free lifestyle as easily as possible. The good thing is that each day is a new day!

Laura

[Nancym]

Stick with it! Sorry you're not feeling vastly better already. I had some improvement in just a couple of days (with the bowels). But my arthritis, fatigue, muddle-headedness took months to get better.

I agree with the others, take the whole family gluten free and concentrate on eating foods that are not processed, like fruits, veggies, meats. Later on, when you're feeling much better you can introduce other things, slowly, taking careful note of how you feel.

[Aimee D.]

Thank you all so much. This has been even more helpful than I had anticipated!! I truely thought that the amount of gluten consumed made no difference on the recovery time or intensity of the ill effects. So in all actuality I can't even begin to blame cross contamination possibilities until I'm completely recovered from the chinese food and beer incident.

I do feel a little better today, no headache anyway. I am however extreamly constipated... no void in 4 days. Also I have been fog/mush headed my entire life, the tought of clear thinking is beyond my wildest dreams. Its difficult for me to get to the store with what I need (blood tester, pump, money, list, baby, sub zero cold weather gear...) much less find edible gluten free food in a timely mannor! Getting back inside the house with everything is a major accomplishment.

It's nice to have a little reassurance from you all though, I've been very overwhelmed lately...

Thanks,

Aimee

P.S. -26 degrees where I live today!

[almostnrn]

I really hope you are feeling better soon! Stick with it and check here often. There are so many knowledgeable and helpful people here. Also don't forget to check out the sections for recipes and gluten free "normal" foods that you can buy at the commissary. If you check with the manager they may be able to provide you a list of items that they stock that are gluten-free and may even order some items in for you. I have found that the commissary here at WPAFB is more than accomidating! As far as making your house gluten free...I would highly recommend it. All of our main meals such as dinner are always prepared gluten-free and I have to say that my kids seem to be much healthier and happier when they aren't eating a diet with gluten in it. Good luck and wishes for a speedy recovery!