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      Frequently Asked Questions About Celiac Disease   09/30/2015

      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 Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can 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-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is 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 Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

New To gluten-free, Question About Cravings
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8 posts in this topic

My 7 year old son and family are going on a gluten free elimination diet to see if we can improve his mood swings and depression issues. Both my mom and sis are allergic to wheat so its not a far leap to assume it hereditary.

I have read as much as I can but haven't found an answer to my question yet. DS has been gluten-free for about a week. We are experiencing a lot of the withdrawal symptoms that many have mentioned. One thing I have found alarming is since being off gluten (I'm sure not perfectly yet) my son has developed crazy craving for dairy. He has pretty much disliked and didn't drink milk for 2 years and now he begs for milk, cheese, ice cream, chips with cheese flavoring, anything he can get his hands on really.

Is this part of the withdrawal symptoms or do you think something else is going on here? I don't particularly want to pull him off wheat and dairy at the same time since I'm worried it would overload him but I don't know what to do.

Help!

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Why not test him for Celiac? At least the blood test, before you take him off gluten? That way you could have a diagnosis for school, college, hospitals, military, etc.

When a Celiac person starts to heal and is finely absorbing nutrients they couldn't absorb before, sometimes they crave the vitamins they are deficient in. sometimes they crave them but get it mixed up, too. Like craving sweets when what your body is saying is it needs fruit. So, maybe what his body wants is vitamin D & calcium?

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A yeast infection may make you crave dairy if you cut back on other carbs.

I did experience hunger cravings when I cut out gluten. I don't think it is unusual or anything.

Diana

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I'm not saying I'm normal, but I had and continue to have simalar cravings for dairy since going gluten-free. It drove me crazy when I had to give up dairy for awhile. During that time, I used coconut milk quite a bit in curries (Indian and Thai recipes.) Maybe he'd like curried fish (or chicken) over rice.

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We are working on getting a diagnosis but lately his mood had been getting so bad that he had begun threatening to commit suicide pretty much daily and also have crazy tantrums and mood swings. Honestly, I begin to worry that he might actually do it so per my mom's suggestion, I'm doing an elimination diet right now to see if it helps. Otherwise, probably my only other option is therapy/and or drugs which I absolute DO NOT want.

At first I thought he might have leukemia or be anemic because he had permanent dark spots under his eyes, had lost 6 lbs in 1 month (that's 10% of his body weight), was extremely lethargic, loss of appetite, was having crazy mood swings, joint pain, and stomach issues. Its only been a week but I *think* I see some improvement.

The vitamin D angle may very well be the case and I guess for now I should keep letting him eat dairy as it doesn't seem to affect his behavior besides wanting more than usual. This is all very new to us so its also extremely scary.

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Thats scary! Even more reason to get an official Celiac diagnosis, if that is what he has. You don't want him thinking he doesn't have a real illness so he can eat gluten in a few years. or schools or hospitals refusing to accomadet a gluten-free diet. You also don't want him on a bunch of drugs or with psych diagnoses when he really has Celiac.

Just an FYI - A wheat allergy isn't the same as Celiac.

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Thats scary! Even more reason to get an official Celiac diagnosis, if that is what he has. You don't want him thinking he doesn't have a real illness so he can eat gluten in a few years. or schools or hospitals refusing to accomadet a gluten-free diet. You also don't want him on a bunch of drugs or with psych diagnoses when he really has Celiac.

Just an FYI - A wheat allergy isn't the same as Celiac.

I know they are not the same thing. My mother has celiacs and also highly allergic to monosodium glutamate and my sister is gluten intolerant so I know the basics just not much more than that yet (it seems heriditary to some degree in our family). I do want to get him tested obviously but haven't researched where to start yet. I'm just hoping the medical industry will take me more seriously than that and won't just try to medicate him with prozac or some other mood stabilizers.

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Go to a doctor and get him/her to draw blood sample and send to lab for full celiac panel before you skew the results by being gluten free for very long. Very simple. He's got the symptoms, insist on this test, emphasizing he has symptoms of stomach problems, weight loss, and lethargy AND a family history. The cravings are also a symptom, but I don't know how many regular doctors would recognize that vitamin and mineral deficiencies caused by malnutrition caused by gut damage = whacky food cravings.

I have had these big time and have successfully used a gluten free vitamin B complex, a calcium/D/magnesium supplement, and a gluten free multivitamin to combat it. (besides food selections). You know how some "experts" scoff at the idea of taking vitamins while on a balanced diet? This is when you ignore them, because they are not living in your damaged and non-absorbing body.

Unfortunately if it is celiac, that does also damage the part of the gut lining which can process lactose, the milk sugar in dairy products. Yes, pulling him off dairy might be overload, but at least knock it back down to lactose free dairy, such as yogurt and/or aged cheeses. If this doesn't help, then you may have to ditch dairy (at least temporarily for a month or several, during the healing phase) and go to calcium fortified, non dairy substitutes such as coconut milk, hemp milk, almond milk or other nut milks, rice milk, etc. You can mix more than one kind to get what taste and texture you prefer, such as taking a nut milk and adding some canned coconut milk to it. You can soak chia seeds in nut milks to make "puddings" or mock yogurt. (just don't use RiceDream brand, as it is made with barley enzymes). There is also a powdered milk substitute called Vance's Dairy Free, which is potato based. There are also non dairy cheeses available, such as Daiya. Some people make "cheese" out of things like cashews.

Craving dairy can also be a sign of craving "fat" in general as a response to losing the carbs in gluten products. This can be countered by eating a lot more "good fats" in the form of olive oil, nuts, peanut butter, avocados, eggs, coconut oil, chocolate, even bacon, etc. Don't be afraid of things like hamburger meat at this time.... growing children need fat in a way that adults do not, and if they've not real overweight, don't try putting them on a low- fat diet. <_< The other good thing to add to the diet is to make sure that somehow you are getting at least 2 servings/day of green vegetables in them, even if you have to do this by making a smoothie with a banana added.

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    • I am very interested in this too. My daughter tested negative for celiac, but has terrible primarily neurological symptoms. Because she tested positive for SIBO at the time and was having some GI symptoms, I was told it was just a Fodmap issue.  I knew better and we have been gluten free for 2 years.  Fast forward to this February. She had a SIBO recurrence that I treated at home with diet and herbal antibiotics because I couldn't get the insurance referral. She was doing great. Then stupid me brought in gluten containing chick feed for the new baby chicks we got.   Feed dust everywhere. Total mess.  Really, no GI symptoms (she was SIBO free by then)...but the neurological symptoms! my daughter couldn't walk for three days. Burning down one leg, nerve pain in the foot. Also heaviness of limbs, headache and fatigue. Better after three days. But unfortunately she had a TINY gluten exposure at that three day mark and had another severe reaction: loss of balance, loss of feeling in her back and arms, couldn't see for a few seconds, and three days of hand numbness, fatigue, concentration problems.  Well, I actually contacted Dr. Hadjivassilou by email and he confirmed that the symptoms are consistent with gluten ataxia but any testing would require a gluten challenge. Even with these exposures, antibodies would not be high enough.  His suggestion was maintain vigilance gluten free.  I just saw my daughter's GI at U of C and she really only recognizes celiac disease and neurological complications of that. But my impression is that gluten ataxia is another branch in the autoimmune side of things (with celiac and DH being the other two).   At this point, I know a diagnosis is important. But I don't know how to get there. We homeschool right now so I can give her time to heal when she is accidentally glutened, I can keep my home safe for her (ugh, that I didn't think of the chicken feed!)  But at some point, she is going to be in college, needing to take exams, and totally incapacitated because of an exposure.  And doctors state side that are worth seeing?  Who is looking at gluten ataxia in the US?
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    • Hi Stephanie, I'm also from the UK, I've found this site more helpful than anything we have!  As already mentioned above, in my experience it could depend on what and where you were drinking. Gluten free food and drink isn't always (not usually) 100% gluten free as you may know, maybe you have become more sensitive to even a trace of gluten that is probably in gluten free food/drink. Is it possible you have a problem with corn, particularly high fructose corn syrup that is in a lot of alcoholic drinks? This was a big problem for me and the only alcoholic drinks I can tolerate are William Chase vodka and gin. I contacted the company last year and all their drinks are 100% gluten and corn free, made the old fashioned way with no additives, so maybe try their products if you like the occasional drink and see how you get on. If you drink out, not many pubs sell their products but I know Wetherspoons do and smaller wine bars may too. l was never a spirit drinker but I must say their products are absolutely lovely! Very easy on a compromised gut too considering it's alcohol. I second the suggestion on seeing a natural health practitioner. I've recently started seeing a medical herbalist, as I've got nowhere with my now many food intolerances since going gluten free last year and I've noticed a difference in my health already. 
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