Chakra2

I am concerned about possible celiac disease in my 2 year old. I went gluten free with myself and my son in January looking for food allergies (not knowing about celiac disease) and later learned that I have had symptoms of celiac disease or gluten intolerance since infancy. My genetic test was positive for DQ2. After 7 months gluten free (with great results for kiddo and me) we did a 4-week gluten challenge with my son. His bloodwork done through LabCorp by our pediatrician was negative. We're waiting on the genetic test results, although I'm homozygous for DQ2.2 so I know my son has at least one DQ2.2. Our GI appointment is on Tuesday.

All of that is the background context of my question -- did any of you here have kids whose bloodwork was negative but whose biopsy was positive? I've read that in theory that can happen but just was curious if that actually happens in real life. I don't want to subject my precious 2 year old to a biopsy if it's not very likely that he has celiac. I am worried about his symptoms (mostly diarrhea and face rash but a few other things too). But I don't want to confuse his situation with mine -- I'm still kind of wrapped up emotionally with the discovery of this ongoing issue for me.

2 other context points -- my toddler is still breastfeeding and during the gluten-free time we did a lot of thongs to try to heal our intestines (which I still thought were just struggling from allergies). Probiotics, fish oil, etc. So now I have this concern that I got him too healed and it might skew the results. Could that really happen?

Any advice or thoughts would be appreciated!

Chakra2

Some people (like me!) find that nightshades cause joint pain, in addition to gluten. Pain that I had for years and that I always thought was running-related vanished on a gluten-free, nightshade-free diet. I do avoid soy, corn, and dairy too but with accidental experimentation I've found out that gluten and nightshades are the big problems for me in terms of joint pain. And this is pretty unlikely but you might want to read about ankylosing spondilitis too and the other autoimmune arthritises just to be aware of those symptoms. Hope your pain goes away!

Chakra2

My GI doctor recommended "Celiac Disease for

Dummies" and it mentions male and female infertility and period problems several times in no uncertain terms. I was skeptical about this particular book but have actually gotten a lot out of it. Might be helpful if you're trying to learn more. Good luck !

Jessica -- those do sound like scary symptoms. I now think I have had celiac disease my entire life, but after the birth of my first child was when my symptoms all of the sudden snowballed. Many were like yours. I later found out that it is fairly common for pregnancy and childbirth to trigger and/or aggravate autoimmune diseases (like celiac disease). I too had the feeling, deep in my gut (ironic, no?) that something was just not right. You can trust your body and yourself. Don't ignore your intuition. I know someone who volunteers at MD Anderson cancer hospital and says that she hears multiple times a day versions of a statement like this: "The doctors told me my tests were normal but I just couldn't shake the feeling that something was wrong." Learning about celiac disease and gluten intolerance has saved me (and my toddler!). I hope you find answers and some peace.

Chakra2

That stinks about your joint pain. I have had joint pain since I was 13-14 (33 now). Back as a teenager I was told that I had pain because I was a girl who played sports. Over the years I would occasionally go back to doctors about it and was always told that it was inevitable as a runner. At age 27 I had knee surgery to try to address the pain. Didn't help. Was told I didn't do my rehab with enough dedication. In January, I went gluten free just doing an elimination diet to check for food allergies. One realization led to another and I learned about celiac disease. I now think I have had it my whole life, based on childhood health issues. My joint pain improved substantially within weeks of removing gluten and it returns if I get glutened. But it actually got worse a few months into the gluten-free diet. I went to my dr, got tested for RA and other autoimmune diseases, everything negative.

Here comes the good news: I finally went to a holistic nutritionist for a consultation about gluten-free nutrition who said to avoid nightshades (tomatoes, potatoes, eggplant and peppers) while healing. My pain vanished within days!!!!! I cannot tell you what a joy this has been for me. I knew I was too young to have hands and feet (and knees and hips) that hurt every day.

My mom has arthritis and has had it for decades. Not once in all her dr visits has anyone ever suggested that foods could cause joint pain. I am a lawyer so I think I can imagine how hard it is to master a medical specialty and I know what it's like to have people beat up on your profession. So I don't want to dismiss an entire vocation but COME ON, PEOPLE! I can't believe that a dr operated on a healthy 20-something's knee without suggesting a 30-day trial of no nightshades. Free, easy, no side effects. I could have saved a lot of money and time -- I actually put a lot of effort into my rehab! Not one of the 7 or 8 doctors I've seen about joint pain ever mentioned food. Not even as an aside like, "I don't buy into this but some people say . . ." Why not? I just don't get it. When I mentioned to my first GI doctor that avoiding nightshades helped my joint pain he said, "What are nightshades?" Do doctors not use google? Granted, I didn't know about nightshades either but I don't put on a white coat and put myself out there as someone who knows how to make people feel better. Sorry for the tangent -- my doctor frustration is really bubbling up tonight.

In summary -- try cutting out nightshades! I was also already not eating dairy, soy and corn. So those other foods might have played a role too but the nightshades thing was an absolute miracle for me.

Good luck!

Chakra2

I don't have any real ideas but just wanted to send encouragement. I've been gluten-free since January too and my health is definitely still a work in progress. Anxiety is one of my gluten symptoms. I don't know much about Milk of Magnesia but gluten contamination could be affecting your mental state. Corn causes serious neuro problems for me too. Not sure if that's a possibility for you? I hope you find some peace on this issue soon!

My mom raves about psyllium husks. She gets them in capsules at Whole Foods. They were mentioned several times in the book The Most Effective Natural Cures on Earth, I noticed recently. Good luck! My poop issues vascillated back and forth between the 2 extremes and going gluten free immediately stopped the D but I still have to pay attention to fiber and avoiding cross-contamination to stave off the C. I feel like fish oil helps too.

Jakey -- just wanted to say best wishes. Your symptoms sound upsetting and I do hope this path leads you towards health. I am 33 and had decades of GI symptoms including gut pain, irritability and depression, fatigue and joint pain. I went on an elimination diet looking for food allergies in myself and my toddler after his pediatrician told me eczema, diarrhea and sleeplessness weren't related to food. At that point I felt fed up with docs too and the frustration at having my intuition dismissed fueled my confidence in my ability to figure this out for myself. 7 months in I still get riled up thinking about it!!! And about the 2 pointless surgeries I had and decades of dealing with these issues when doctors could have at least MENTIONED that food causes these symptoms for some people. So without meaning to (I had barely even heard about celiac) I discovered the wonders of gluten-free living and (most days!) haven't looked back.

I have struggled with the whole question of pursuing a diagnosis, though, just to be honest. I feel stuck -- I do not want to eat even 3 meals of gluten much less 3 weeks -- but it just feels hard sometimes wondering if this is all in my head. I know it's not but I find that the farther I get from a glutening the more I start thinking, "This can't really be true. There is no way that a perfectly healthy food particle can cause me a week of distress." Being diagnosed would help my incredulity, I think, and help with explaining to family and friends. I am thinking about getting a biopsy for that reason. My GI doc (who I finally consulted about a month ago) said that a skilled pathologist can sometimes identify intestinal damage even this far out.

Anyway, back to you! I guess what I most want to pass on is that I believe in you! You can figure this out and then as a medical professional be such a blessing and a resource for others. I just went to my dentist for the first time since going gluten free and had some questions about my mouth (mouth sores are a gluten symptom of mine) and about Sjogren's and he seemed pretty clueless. Kind of bummed me out because I really wanted some advice. I would drive a long way to see a dentist who I knew specialized in celiac patients.

One note about joint pain -- I had mild-moderate pain since I was 13 or 14 and it's definitely related to gluten for me. But I was surprised that after a few months gluten free, my joint pain suddenly became way more severe. That's actually what eventually drove me in to see a doctor. I was sure I had RA. Turned out it was nightshades. I had started eating a lot more potatoes to replace grains and once I dropped all nightshades (and my few other food intolerance foods) my joint pain vanished. That has been my favorite resolution in all of this! So I hope that being gluten free helps with your pain but you might want to experiment with eliminating other foods too if it doesn't completely resolve.

Good luck!

Chakra2

With that list of foods you don't tolerate, I hesitate to ask this but what about soy and corn? Those 2 foods cause me GI and neuro symptoms and it really helped once I got rid of them. Many of my favorite vitamins and supplements had to go.

Also, it sounds like you are very careful at home. Do you get to eat most of your meals there? I find that even "safe" restaurant food can still bother me and I'm 7.5 months gluten-free. Dropping the corn, soy (and dairy, for me) and not eating out has really improved my ratio of good days to bad!

One last thought, I started seeing a holistic nutritionist at a chiropractor's office. She gave me advice about diet and supplements for healing that I have not heard anywhere else. Maybe someone like that could give you some beyond-the-mainstream advice that might help. I started feeling tons better once I followed the nutritionist's advice. I thought of it because of your comment about the vitamin levels. Seems like holistic and alternative health care practitioners sometimes consider different levels of vitamins to be "normal" and can help you safely boost levels to address specific problems in a way that regular docs might not think to do.

Even acupuncture or energy healing or some other complementary medical practice might be helpful at this point to tap into new healing for your body. Not sure how you feel about any of that but it sounds like you've got the gluten-free basics down so I was trying to think of other ideas.

Chakra2

Love my Tom's of Maine toothpaste! I took awhile to get used to the taste but I've been using it for years now. I have a gluten-sensitive toddler, too, so I found California Baby soap, shampoo, conditioner, lotion and sunscreen in the baby aisle and I like their stuff -- very clearly labeled gluten-free. I get Tom's at Whole Foods and California Baby at WF or Target. Don't have much advice about makeup -- I'm still exploring that category but if you search here for old posts I think you'll find lots of tips and good brands. As for laundry detergent, I use 7th Generation from WF and don't think I've had any problems. Plus, not everyone will react to gluten contact on skin. I am more concerned about personal care products that could end up in my mouth by accident. But I did find these things called soap nuts at Whole Foods and I tried them on a whim and they seem to really work! No gluten, no toxins, less pollution. Kind of weird but neat!

I definitely had a noticeable improvement when I switched out my hair, face and body products to gluten free.

It sounds like some of your symptoms are improving but others are not, right? That can be so frustrating. I'll pass on my general chronology of feeling better in case it might help. The basic message is that feeling better on a regular basis took a long time for me. At 2 weeks in I still felt rotten every day, even though some of my symptoms were already noticeably better.

MONTHS 1-3: Went gluten-free in January, undiagnosed (I didn't know anything about celiac disease, was just doing an elimination diet to find food allergies). GI symptoms improved within days (no more D, no more gas, pain or bloating). Other symptoms, like fatigue, mood issues and joint pain still present. GI symptoms would return frequently. I felt "allergic" to everything I ate. GI improvement was enough to keep me going though. Gradually I saw other improvement. I would have 2-3 good days, then 2-3 bad days. Or even more like 2-3 good hours, then 2-3 bad hours! Roller coaster for sure.

MONTH 3: BIG turnaround! After learning more about celiac disease and gluten intolerance, I dropped all dairy, soy, and corn. Also started probiotics and other supplements. Mood and energy issues improved. Joint pain got worse.

MONTH 4: honestly thought I had RA because joint pain getting so bad (and I'm only 33). Tested negative. Read about nightshades, dropped those. Pain vanished within days. Turned out those gluten-free subtitute foods had a lot of potato in them! Also started to absorb more of the info about how to avoid gluten. I started eating out less and being more careful to ask questions when I did, I got gluten-free dog food and treats, and switched all my bath products to gluten-free versions. Slowly but surely, started having way more good days than bad. GI symptoms return when accidentally glutened.

MONTHS 5-8: Life is good! I finally feel good for weeks at a time. I feel like it's such a new development though that I'm a little paranoid --don't eat out right now, don't eat at friend's houses. I know I'm probably being stricter than necessary but I've just felt bad for so long that I am cherishing my good days and don't want to do anything to mess them up! I'm hoping I get less paranoid about gluten as I go along.

To summarize, my advice is to keep up the good work! Your intestines might take months to truly heal and until they do you might still feel all kinds of lousy symptoms on and off. Check into other common food intolerances, and think about dropping those foods temporarily while you get better. A lot of the gluten free processed foods unfortunately have ingredients in them that can be related to other common intolerances. (FWIW, I have nausea as one of my symptoms and it took months to really go away -- now if i get a little gluten or a lot of potato it comes back.) Keep reading this board and other resources to learn more about how to avoid gluten in all its forms and how to avoid cross-contamination. I wish you luck -- the next few months may be your turning point too!

Chakra2

Ice cream popped into my mind. Maybe because it's 100 degrees where I live! My 2.5 yr old loves the Tempt hemp milk vanilla flavor. It's gluten, dairy, and soy free. At summer camp, we used to have an ice cream night with toppings like "dirt" (crushed Oreos) and worms (gummies). Maybe there are gluten-free/df/sf versions of those? Happy birthday!

Discovering that I have some kind of gluten sensitivity has caused me to look back over my entire health history and say, "Ohhhhhh, that's what that was!" My mom tells me that I had colic and daily projectile vomiting for months as an infant. Is that a symptom for any of your kids? Did your doctors pick up on it? I was born in 1976 so it seems like my pediatrician would have known to look into celiac disease back then if the colic/vomiting really is a symptom, right?

I read on an NIH webpage that GI symptoms are more common in childhood celiacs, while non-GI symptoms are more common in adult celiacs. I have a parent investigating celiac disease and that trend would fit. Would anyone diagnosed after age 60 be willing to share what your symptoms were? Since my parent doesn't have noticeable GI symptoms he or she (who doesn't trust Internet annonymity!) is wondering about whether or not celiac disease could really be an issue.

My 2 yr old is in the process of trying to figure out a diagnosis (gluten sensitivity vs celiac). He has GI symptoms but the issue that really got me started looking into all this was sleep. He was still waking 4-5 times a night at 18 months. I asked my pediatrician if it could be food-related and he said no, but I felt like I was seeing a connection and started googling. Anyway, as soon as I took him gluten (and dairy) free, he slept through the night. Instantly. But my pedi still says (as recently as 2 weeks ago) that he doesn't think sleep problems are a celiac/gluten-sensitivity symptom. He's more focused on the GI stuff. So I wanted to ask -- did any of your kids have sleep troubles before they were diagnosed?

Chakra2

I only have one child (age 2) but he and I both have gluten issues. I don't have much advice about avoiding CC in your situation, but I did want to mention that my son's GI symptoms improved after I did some things that seemed kind of extreme to me at the time. Now I won't argue with the results! I switched all of his and my bath products, diaper cream, etc to gluten-free versions and switched to a gluten-free dogfood. We also did no restaurant food and no eating at other's houses (I just brought food for him) for 3 weeks. It helped a ton and now I feel like we've been able to ease up a bit without noticing symptoms. For example, he ate gluten-free restaurant food a few times recently with no symptoms.

We also did no dairy for 3 months but have now added yogurt back in. So -- not exactly addressing your question but just some other things to think about. For what it's worth, I had a gluten free kitchen for the past 5 months and have recently switched back to having some gluten in the house and I REALLY don't like it. I loved knowing that there wasn't anything to worry about in my own home. Eventually we'll go back to that -- less stressful and really not that big a deal for the "normals" in the house. Just my 2 cents!

I am so sorry you're dealing with all of that. Just wanted to mention to a fellow H-towner that I love my nutritionist. Dr Cynthia Tait at Whole Health Associates near downtown/River Oaks/Montrose. She sometimes tells me VERY different things than what my doctors (and especially pediatrcian) tell me but her advice has worked for me when other things have not. She has personal and professional experience with managing autoimmune diseases with diet so I like that too. Hope you find answers soon.

Chakra2

Dear Coffee,

As you know I never drank much of you during the week. But on the weekend at brunch I would have a couple of cups right alongside my pancakes, French toast, or breakfast tacos. Who did I blame for all the symptoms that inevitably followed such a feast? You! For years I thought you were the problem and I wasn't afraid to say it to your face. Coffee, thank you for your patience and your forgiveness. Let's get to know each other again. Yes, I WOULD like another cup.

Sincerely,

Chakra2

I'll chime in with another "it takes awhile" comment. My GI symptoms improved immediately going gluten free, but the other symptoms (brain fog, the blues, fatigue, joint pain) took much longer to clear up. It was 5-6 months before I felt remotely okay for more than one or two days at a time. The things that helped me, I think, were time to heal; eliminating dairy, soy and nightshades (nightshades especially made a difference pain-wise); weeding out more and more contamination culprits (including avoiding all restaurant food for awhile); changing personal care products to all gluten-free shampoo, etc; making the whole house gluten-free (dog food, no gluten at home for husband).

Also, after keeping a food diary to help track down my other intolerances I did notice that eggs make me feel totally exhausted. I eat them once a week or so anyway just for some variety but I now know to expect major sleepiness 1-2 hours later. So between the cottage cheese, eggs, and salsa (nightshades) you could be eating something there that doesn't agree with your body right now. So you might want to explore other food intolerances before you work on the supplement angle. Getting rid of foods that are slowing down your healing will help the supplements work better, in my opinion.

I did try to get my b levels up from the beginning with probiotics (I still take a double dose most days) and fermented foods like Rejuvelac. (google it for a recipe -- and then follow the directions but use quinoa instead of rye or any other gluten grain). So you could try that before you jump to injections.

One caution for the future -- look out for gluten in baby stuff! Switching to gluten-free baby shampoo, lotion, and diaper cream really helped me and my son. I like the California Baby products because they're so clear about their allergen labeling.

I hope you find some relief here before your baby comes. I have never felt as stressed as I did trying to care for my child while I was still sick. Not fun. Good luck!

I have read about why some celiacs have trouble digesting dairy at first -- you need the lactase from the tips of the villi. But why are so many gluten-sensitive people also bothered by soy?Is there a similar anatomically-based reason?

Also, I'd love to know if/when/how anyone was able to reintroduce soy. I was vegetarian for 19 years (now pescatarian) so I did learn to love my miso and my tofu! And wheat-free soy sauce would be a big treat now that it looks like I'll be eating a lot of rice from here on out.

I'm curious about a dairy issue, too. Are all lactose-intolerant (non-celiac/non-gluten sensitive) folks out there missing the tips of their villi? Or are there other reasons that "normal" people become lactose intolerant?

This might not be your issue, but there are several gluten-free foods that cause me stomach pain: dairy, soy, corn and rice. Nightshades (potatoes, tomatoes, eggplants, peppers) cause me severe joint pain, but not stomach pain. Celiac disease does bizarre things to your intestines -- it could be that, even without GI symptoms, its caused you to have an intolerance to another food. Also, are you sure you have all gluten out of your diet, bath products, significant other's diet, etc? As you eat gluten-free, you might become more sensitive to even small amounts of gluten. Hope you can feel better soon.

I'm sorry to hear you're still

not feeling better. For what it's worth, I remember still feeling crummy at 5 weeks. My GI symptoms were improving but I still felt enormously fatigued. Eventually I eliminated dairy, soy, corn, some nuts and nightshades (based on allergy testing and my own experiments) and that helped. As my gut slowly healed, I started to feel better thanks to absorption of nutrients. It took me awhile to master the diet (3-4 months) and to weed out all the hidden gluten in the house (dog food, bath products, etc) and to learn how to avoid cross-contamination. It wasn't until 5 or 6 months had passed that I really started to feel good on a daily basis.

So maybe keep exploring what else might be affecting you and give yourself time to heal. I hope those things help!

Chakra2

A while back I found some old threads on this site about NAET. They were all from a year or two ago but had some interesting info. I have not ever tried it myself but am pretty curious about it. That stinks that you didn't notice results.

Chakra2

Just curious what people's experiences have been with this. My levels were normal after 5 months gluten free. My 2 yr old hasn't had his bloodwork done (waiting on appointment with his GI doc).

Would kid's levels return to normal more quickly than an adult's (assuming good compliance with the diet)?

Chakra2

I use California Baby lotion for myself and my toddler. I like the calendula cream for my face and the everyday calming lotion for body. I'm not crazy about the scent though so I add a few drops of essential oils to it. I like that it's clearly marked as gluten-free (and dairy, soy and nut free) and I can find it easily (online, Target, Whole Foods). I was doing well buy still noticed a big jump of improvement when I finally got rid of the gluten in my lotions, etc.