This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc. Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease SymptomsWhat testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease ScreeningInterpretation of Celiac Disease Blood Test ResultsCan I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful?The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-FreeIs celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic TestingIs there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and DisordersIs there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients)Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients)Gluten-Free Alcoholic BeveragesDistilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free?Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free DietFree recipes: Gluten-Free RecipesWhere can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.For Additional Information: Subscribe to: Journal of Gluten Sensitivity
My initial test came back negative too. But I'd been easing off gluten to support my kids' new gluten-free lifestyle. I insisted the dr refer me to a GI for a deeper look. My dr then said I didn't fit the picture of celiac disease (I'm overweight). I then demanded the referral as I wasn't ALWAYS so fat (5 large-birth kids tends to add weight in some women!) and I'd experienced physical reactions to certain foods my entire life!
The test came back 'inconclusive'. There was something going on but my GI refused to rule out celiac disease completely and immediately put me on a gluten-free diet. That was nearly 7 years ago. Last year, this same GI dr did another endo on me, looking at all parts of my insides to see why I was still having issues. On top of that, I had an allergy skin-poke test done, + allergy blood panel done. No allergies came through, but the new test showed a brand new condition which is somehow linked to celiac disease:
mastocytic enterocolitis (I think I spelled it correctly here). The cause: an allergy to something I'm eating!
BUT I have no clue what it is! and neither do they!
There are other tests to do beyond the blood test. For one of my children, she had blood work, a stool sample, and an endo, all to verify that without a doubt she does have celiac disease. All were positive, but she did it at a time when she was on Very Gluten gluten diet for more than 1 month. Nothing was eliminated from her diet until AFTER all the tests were completed. My son has many symptoms but tested negative so far, however we did a gene test on him which means celiac disease has the potential of becoming active at any moment and must be tested every 3 years.
Taking out/altering your diet can change the results even enough to come back negative. As uncomfortable as it is, stay on the strict gluten laden diet for as long as possible before a test(don't kill yourself over it though) and don't feel bad about requesting a retest. You are allowed to ask for a second opinion, or even a new dr as I did! And make sure you see a dr that truly specializes in celiac/gluten related illnesses as not all GI drs are, they just know enough to slap a label on ya and send ya out the door.
Its your only body, and you know it better than anyone else! Don't stop pushing for proper care until you are satisfied with the results. If 3 drs have the same results, and there are truly no other specialists/options, then take out the gluten on your own and avoid things that make you uncomfortable, regardless of a negative test result. You don't have to have a disease or allergy or doctor's note to not like something.
Living shouldn't hurt. I hope you can get things worked out soon!
No kidding! I'm a recovering food addict, with a very strong remedy!
This past summer my fam dropped cable tv and picked up Netflix. My husband got in a mood while I was vacationing with the kids and started watching documentaries on Food Habits. When I returned he had me sit and watch one or two with him. "Fat, Sick, and Nearly Dead" started it off for me. Then there was Food, Inc. followed by one that talks about the beverages we drink that come in plastic containers (which dissolve into the drink before we even purchase it), and an entire slew of other videos that twisted my brain AND my stomach (seriously, seeing a man remove a 'plug' from the side of a living cow and thrust his hand into the cow's gut while the cow is eating, and say it doesn't hurt them???--eeewww).
Ironically, since watching those shows, I'd found I couldn't drop the addictive habit which has become a way of life for so many Americans. I tried...lasted only 3 days for the juice diet, felt great, but old habits tend to be ingrained and I was back at the grease-joint, suckin down the liquid sugar.
Then in November, the most embarrassing thing happened. I got the most severe case of... hemorrhoids! Oh my, I didn't know docs operated on them, seriously, who talks about that stuff!? So...in I went for surgery (after 3 drs said they weren't going to touch me and referred me off to the next specialist!) to remove internals and externals the size of my dr's thumb! (The cause: Two back-to-back days of Sonic's Chili Coneys with a side of cheese tots and a soda, just to ease a craving!). Spent an extra night in the hospital because of the pain (and night nurse was only permitted to give me ONE dose of morphine!) I laugh about it all now, but ooooh! if that isn't a life changer!
For one entire week I could only handle taking in apple juice (yes, out of that dreaded dissolving plastic bottle). I didn't dare have a bm, and since it takes up to 3 mos or more to heal I'm still scared of that natural part of living!
The forum for these operations mentions that most people will return to the diet that caused them. Sure enough, I'm one...but!...oddly now, I can't stand french fries--they taste like salted cardboard coated in grease. Anything greasy makes my mouth hurt, and my gums itch. Soda, chips, and many candies now cause my tongue and throat to swell and I suddenly develop sinus issues and a slight cold! I don't dare touch anything with gluten as it requires a chaser of a very large dose of a laxative (and cancellation of all activities the next day!). I still go to those junk food havens, but I found, I don't eat like I used to! I opt for salads with no dressing (what is IN those??); baked potato over fries; and I choose chicken over beef, even though they are both deep fried there is just something about beef at fast food that makes me feel blah! and I can't swallow it (even steak!). And I've switched from soda (with an occasional child size when out/about that takes me all day to down) to tea and filtered water which is now always at my side.
And the smell. It turns my stomach so that I'm just not interested in eating. The smell of fresh baked gluten-bread will turn my stomach some days, but I feel hungry after smelling it (have to retrain the brain; it's all a mess!).
This is what our country has come to. We are so trusting that we don't question what is put on a plate in front of us. We are a country of addicts, but we are stubborn addicts and don't like to be told what is/isn't healthy for us.
Sometimes it takes a surgery in a certain part of the body to make ya change your ways because ya really, REALLY become aware of what you eat! (I wouldn't wish that surgery on my worst enemy!!)
Glad you vented! I agree. We have become accustomed to eating "garbage".
While on tour at a potential college for my daughter, I personally stopped in the cafeteria and asked if they had gluten free items. I was assured they did and the manager even took time to speak to me. As we were talking, he said, "We make sure to have Semolina bread for anyone wanting gluten free sandwiches."
I stopped dead in my tracks. I firmly informed him that SEMOLINA is NOT gluten free and his jaw dropped. He said he was going to research that immediately after I left. (I somehow doubt he did but let's give him the benefit of the doubt.)
My daughter chose not to attend that college for other reasons, and was embarrassed that I'd stopped to talk to the chef, but hey, she's still my baby!
Schools are trying to get on board with this 'gluten-free mumbo-jumbo' but few really have a clear understanding of it. Absolutely be your child's advocate! If the school says they have gluten-free, nut-free, soy-free, etc. ask them for a tour and ask to be permitted to look at the ingredients of their product, even observe them preparing food for a gluten free meal during their busy period (just because they offer gluten free ingredients doesn't mean it is prepared gluten free!).
If they refuse, go to the campus department that deals with special needs (each campus has its own title for this). Request that they work with you on creating a 504 for her college years (yes, even your college student be on a 504, as can grandparents in a nursing facility), and make sure that she is placed in a dorm that allows her to have her own food supply away from other residents (my other daughter has a problem with rmates 'stealing' her food because it is sooo good--good yes, cheap NO!
Kudos to you for being willing to stand up WITH her! (I realize I only addressed the gluten issue, but your daughter has enough reactions to foods that she really does need to have her own meals purchased/made by her. It is far to risky in the college cafe' in which ingredients, personnel, and cleanliness habits change almost instantly.)
You are quite welcome. I'm glad I could help! Please post back here how the results come out. I know you are overwhelmed, but believe me, it does get easier. Keep in mind, don't rush into anything. Your little one needs 'a gift of time'. Just because he was in a rush to get here, doesn't mean you have to rush him through life. And with every child, it is hard to know what to do when you don't speak Baby. I'll keep you in my prayers.
(My husband is telling me to make sure I tell you to request a 'Full Panel' so the doctor gets an accurate picture. He is also reminding me that even if your little one isn't full celiac, he may be highly sensitive/gluten intolerant which still requires a gluten-free diet.) And I'm telling him, one step at a time.
MJ- I know your fears, frustrations and confusion. Multiply it times 4 and that was my situation, all in one day! My response may be long, but I'm going to try to address all of your thoughts. My background is: Mom of 4 active celiac disease girls, one gluten intolerant/gene son; girls all dx'd in '04; read every medical article I possibly could for 2 years while working on Masters/Education, and now volunteer as a coach for new celiac disease parents.
1. Welcome to the board! What a great place to turn to for support (it kept me going in the early days). Check your area for nearby realtime support groups, too. Contact the leader and see if they can meet to talk in person with you or if they can give you some resources.
2. Weight loss is a symptom of celiac disease (and so is colic/gas pain that causes babies to pull legs up, but it could also be symptom of other things), and if your ped is referring you to a Ped GI, you are in good hands. The Ped GI will be very thorough and help identify the cause. The US does not usually test for celiac disease at all in children unless there is a visible concern, but it is standard practice to test every baby very early in other countries. Here it usually isn't earlier than 2, after food has been introduced for a time. (My youngest was 2, and her gliadin levels were insane! I wish our ped had tested earlier, what I know now would have terrified me then, and I'm thankful we got her in time.)
3. Your baby is a premie. Don't go by the standard "Your Baby Should Be Doing This" calendar/poster displayed on the back of the doc's door. Go back about a month (or two if he was really early) and that is where he should be. Most babies start eating at 6 months, but yours isn't "really" that old if you think about it a bit differently. Slow down. If he's still hungry, extra milk as opposed to solids will help him for a while.
4. "Freaking out" is normal. At least you knew how to spell the disease! I had no clue then, and there really was very little then as compared to now. But relax and breath. There are so many folks out there ready to jump in and help you out.
5. Changing your home/lifestyle isn't as difficult as it seems. It took me 7 years to get to some realizations about things, and I wish I'd known some things sooner that would have saved my sanity and my bank account! Your baby boy can live a pretty normal life, and you will all be healthier for it, too! (Don't dump everything you own on day 1 just because you read it on the net or in a book!)
6. You can get gluten free foods in the very grocery store in your town. We are a country that thinks a loaf of bread, a pan of pasta, a gobs of gravy are a must at every meal. Be creative with your meals. You have plenty of time to explore new food/cooking methods. My family rarely has bread and pasta meals any more (and my bank account is sooo much happier for it!). We always walk away from the table quite satisfied, too! Cooking is an adventure in our house! We've come up with some pretty tasty meals!
7. You are a good mom if you are jumping now, you are not crazy at all! Many restaurants now have gluten free menus, ask when you get there or call ahead to see. My kids pack baggies full of fresh fruits and, yes, veggies, and we take them along for snacks. Some schools are offering gluten free meals for celiac kids (ours is one). There are many kid fav snacks (fruit roll ups, chips, etc) that are gluten free that ALL kids like and don't even know it is gluten-free. Always prepare a back up for your kiddo, with extra for him to share.
8. It usually takes lab results about 2 weeks tops to get back to the doctor, depending on the lab. Usually a blood test is done prior to the visit so you save time and the doc has the results when you walk in. (We go through this annually.) You could request a gene test at this time, too, if your insurance company will cover it. If the test comes back inconclusive, you will know if further testing will need to be done if he does indeed have the gene. If no gene, no stress about celiac disease! I'd also ask if they could test for any other food allergies at the same time/same blood sample.
9. It is a mother's natural instinct to worry. Keep a diary. It helps sooo much with your sanity, and when your baby is older, you can share some memories with him.
10. I disagree with the gluten breaking down enough comment (to me its like saying "I watered down the tuna salad so your baby didn't get a lot of tuna."), but I'm not a doc. I'm not sharing this to freak you out more, only to give facts. Any amount of exposure to gluten in a celiac person causes damage. (This is the very reason for the debate over the Host in Catholic churches!) Even the smallest amount can cause enough damage that it could take up to 6 mos or more to recover (that is the average time the body needs to repair from all major injuries). Stopping gluten intake won't mean instant healing either, regardless of how long you've been on it.
11. I've spoken with many parents who felt the guilt (I did!). You didn't do anything wrong, keep telling yourself that. You didn't know what was making him cranky, and the care you provided was not intentionally meant to harm him. I'd do the exact same thing, as would every other mom. Baby cries = Feed Me!
12. Yes, your other child will need to be tested IF your infant's test comes back positive. You and your spouse will ALSO need to be tested if the results are positive.
13. Returning to strict milk diet is a good thing. If cereal is the culprit, going back to a liquid diet is far safer. Just means he'll be eating more.
14. I HIGHLY recommend a food diary. In it record the date, the time of each feeding, the amount he ingested, any symptoms that followed and the time of the symptom. IN ADDITION, along with what HE ingests, list everything YOU ingest, including the time, and amount. Mark items that you know have gluten in them. do this until you can identify a pattern, or you see the doc. Docs LOVE data, so bring it with you when you go in.
15. No one in my family had been diagnosed with the disease either, and it isn't on my husband's side. My children were the first. Both of my parents refuse(d) testing. Now a few distant cousins of mine have been tested positive so I can see the potential link. Many in the older generation refuse to be tested, saying they don't want to know. I think it was like 97% of celiacs don't even know they have it.
16. If your son does test positive, be aware that you, and your hubby, and even your 2 year old if you decide to have a completely gluten-free home, will experience the stages of grief. NO ONE EVER TOLD US THIS, and I watched each of my children crumble and I was helpless!!! You have already experienced a few, and it is normal: shock and denial/disbelief; pain and guilt. You may start to feel anger at the new lifestyle being thrust upon you. There may be a period of depression that everything you dreamt of is now in question; as well as Loneliness, feeling like you are in this alone (come back to this site when you feel this way, vent it here, there are so many who will help you through it!). Finally, you start to accept what is and learn neat little tricks to make life easier, and life is actually more fun. It won't be long before you are in control of everything again.
17. continue to feed him his NORMAL diet (that means you have to eat gluten as normal), as prescribed by your Ped. If he is being exposed to gluten through you, and it is in fact gluten that is irritating him, it will show up. After the test is done, you may tinker with his diet (and yours). Don't make any changes until after that initial blood test is performed or you could skew so many things. It is tough right now, so any time you have a fear, CALL YOUR DOC! They have to keep a running record of your calls (you should document them, as well).
I hope I responded to your concerns, without making you more afraid, and offered some ideas to help you out. Three weeks will pass by quickly. You are a good mother, and you have not done anything wrong. Follow the Ped's instructions, and watch your child closely, and don't hesitate to call your doc for answers. Your ped should be willing to help you out...she got you here!
I wish I could take the celiac disease away from my kids, and deal with it all for them, but my kids are tougher than I give them credit. My middle child was 9 years old before she finally got a diagnosis of what had been making her ill since she'd started solids as an infant! (9 to 11 years is typical time for accurate celiac disease dx!) It was because I pushed to find out what was going on with her that she 'saved' her little sister, then only 2. My youngest daughter's gliadin levels were sky high; she was seriously ill and I didn't know it. Like her older sisters, she had dark circles below her eyes which I blamed on the dark skin tones of their daddy. Now there is no hint of celiac disease in their faces and they are only checked every other year.
Take care of YOU as well as your little guy! Best wishes.
In 2006, I began working on a Masters/Education. For 2 years I read every single medical article I could get my hands on about celiac disease, its affect on children and learning, and how schools work with celiac kids and their families. My classmates were sick of hearing about it! Until I put it all together for my final Action Research Project presentation. THEN, they got it. They understood. My obsession was because of my own children: 4 with active celiac, 1 with gluten intolerance/gene who acts very, very much like the children described here (thank you for sharing!).
Gluten exposure was once explained to me early on as having the same affect as rat poisoning, it kills slowly.
However, after reading so many articles, interviewing so many parents, and seeing the affects of gluten on my own children first hand, gluten has more of the same affect as alcohol, making our children high functioning 'drunks'! Gluten affects the brain and body in much the same way as alcohol does, and like alcohol, it affects each person quite differently: ability to focus and balance, memory loss, uncontrollable or sudden angry outbursts, depression, lack of interest, exhaustion, black outs, etc. I have seen all of this at different times and in each of my children (or myself) over the past 7 years, some heartbreaking and some terrifying moments that non-celiacs just wouldn't understand.
From what I have learned, repairs can take anywhere from 6 months to 2 years or longer. The sad truth is, in worst case scenarios (when the gluten free lifestyle is not strictly adhered to or caught early enough), the damage may not be completely repaired.
My oldest children are now able to explain to me what happens when they are exposed. My eldest says she becomes angry at everyone for everything and can't stop the anger, so she isolates herself until she feels the worst affect has passed. She added that she can't think straight, is illogical and overly emotional. My next eldest says she feels like all the energy has been zapped from her (she was also anemic), that something is squeezing her until she feels like she is going to explode. She also says her bones hurt, like fibromylagia (this limits what she does today). When she has been exposed, everyone knows it within 15 minutes as she becomes verbally mean to her siblings and has become violent at moments. My middle daughter says she hurts all over, has 'major brain fog', feels extremely agitated and even the smallest thing will set her off, is lethargic, just not wanting to do anything, and even nauseated. Though they all were good students, all have said they can't remember what teachers have told them, what they wrote in their notebooks or read, or events of the day, and math was their toughest concept to grasp.
My youngest daughter, Calli, the very editor of the Celiac Kids Club online magazine (GIG is our sponsor), now 10, is going through the stage of "It isn't fair. I HATE celiac disease!"--almost on a daily basis. She writes about her experiences, her frustrations and others' reactions to her, and things she learns about celiac disease as the celiac mouse character, Swheats, in her magazine. The magazine creation helps her understand the condition, and allows her to vent a bit, too. (We'd LOVE to have other kids, or their parents, share with us, too!)
My son, only 7, says he can't stop his anger (which I believe), and every night he begs me to scratch his back or put lotion on him because it feels like his skin is crawling (that would make me unable to sit still, too).
Yes, they do grow out of it and they do eventually decide on their own that they don't like the affect of gluten on them! Its that time between now and their own moment of self-realization that is exhausting for parents.
You will go through phases:
1. You control everything in their environment until YOU see improvement.
2. They improve and think all is better, then beg for gluten items and you will be tempted to give in.
3. They start to sneak gluten when they think you will never know (but as a parent, you WILL know!)
4. They realize (expect this to be late teen years) they don't like the feeling of gluten in their bodies and they will stop having it in their diet.
This forum is a great place for support. Check into local support groups as soon as possible. And make sure you take a break at least once a week, just you by yourself, away from the stress that celiac disease throws at you. My battle with celiac disease a daily adventure. I never know what to expect.
It isn't the child that wears you down, it is the disease. Stay strong!