Chakra2

I got sick last week and have been trying to figure out what it was. My toddler normally eats gluten-free but without going into the reasons why, he did have some regular cookies one day. I knew about it and tried to be careful with handwashing. But he is still breastfeeding and I wondered if gluten from his mouth could get into my bloodstream during nursing. Is that really farfetched? I have read that a nursing mom's body receives chemical info from baby's saliva during nursing that primes the mom to release more or less of certain nutrients in the milk based on what baby's specific needs are. So I thought if that really happens then maybe gluten could get in too?

From what I gather, it is somewhat debatable. Gluten is too large a molecule to be absorbed by the skin but some people seem to get symptoms from the accidental ingestion of gluten bath and skin products. I can tell you that I was feeling pretty good a few months after going gluten free, but still noticed a significant improvement when I weeded out all of the products I was using that contained gluten (or soy -- I'm intolerant). I also switched all of my toddler's products since I thought I could be getting those on my hands (and then in my mouth), or just getting glutened from kissing him. I use California Baby products for myself and for my son now and try to use baking soda and vinegar for anything I possibly can (non-toxic, no gluten, and cheap!). Dropping my gluten-containing lip

gloss (vit e from wheat) and my body lotion I think were especially helpful.

I'm sure those were both getting in my mouth.

We are in the process of trying to figure out if our 2.5 yr old has celiac. I've recently learned that I probably have had it since infancy. I've read that wasting of the bum muscles is a celiac symptom but don't feel like I've seen much about it on here. My son is pretty healthy and has stayed 50th % for height but has slowly dropped down to 5th% for weight. I took him gluten-free in January not knowing about celiac disease, just trying to solve severe nightwaking. I now think that one of his glutening signs is loss of appetite. So I'm not sure if it's gluten-free diet, loss of appetite from occasional glutening, or muscle wasting that's causing the weight issue but his pants have been falling off for months. I still have him in 18 mo shorts but he doesn't look super-skinny to me in any other body part. I just can't keep his pants up! He eats great when he hasn't been glutened and I give him high fat foods (bacon, etc) to try to make up for the other diet restrictions. I do feel worried about his weight though. Was gluteal wasting a symptom for anyone else's kid? How long did it take to resolve?

I have learned that nightshades cause joint pain for me. But I've read intriguing tidbits about the possibility of managing nightshade intolerance by using various preparation methods (using plenty of oil, cooking at a high temp, etc). Does anyone here have experience with this or know where I could read more about it? I don't miss gluten but I'm not ready to say goodbye to tomatoes, eggplants and jalepenos forever. Potatoes maybe, but not the others!

Thanks for any advice!

Chakra2

I don't want to admit it but corn freaks me out. I get D right away, then 3 days later I get extremely angry. I feel embarrassed to admit this but it is true and really disturbing. This intolerance has been way more difficult for me to deal with than gluten. First, I live in Houston and love Mexican food! Second, I don't get the horrible gut pain like when I eat gluten so gluten is not tempting but corn still is. The D doesn't really bother me (what's a little more in the life of a celiac patient), but the neuro symptoms are truly upsetting. How is it that food can really affect my emotional state so much? And 3 days later? But I've tested it enough to be sure.

Anyone else have an intense corn intolerance? Any kinds of corn you CAN eat? Has anyone been able to eventually add corn back in?

Chakra2

Thanks for the replies! I'm hearing mixed responses about how people are feeling, which actually is helpful

for me. I feel sooooooooooooo much better (yes, that many o's better) than I did 6 months ago but I feel like I'm still learning and still have ups and downs.

I noticed a few posts recently that mentioned being 7 months gluten-free. I started this in January trying to resolve food allergy issues in my nightwaking baby. Did not dream that it had anything to do with my health issues!

Anyway, just wondering if there are other New Year's Resolutionists out there. I would love to know how you're feeling at this point. Which symptoms have resolved? Which issues are still troubling you? Have any of you been able to reintroduce any secondary food intolerance foods back in (eg dairy, soy)? What's your current treatment/healing regimen?

Chakra2

It took awhile to get my mom to be open to testing.

I'm about 7 months gluten-free too! How are you feeling? I felt a huge improvement within the first 2-3 weeks, then roller coastered through months 2-5 figuring out the diet and other intolerances, and just in the past 2 months have finally felt back to normal. I love feeling like a human being again!

I had a chance today to ask questions of my mom's GI doctor -- kind of an informal second opinion. I went gluten-free in January trying to address other health issues before I got celiac testing done. My original GI doc said celiac was likely but no need to do challenge or biopsy since my genetic test showed celiac genes and I was doing so much better after going gluten free. My mom's GI doc said he agreed about not doing a gluten challenge (no need to feel miserable) but that I should get a biopsy. He said that a really skilled pathologist can see signs of old damage even months after being gluten free.

I'm trying to decide whether or not to do it -- hassle, expense vs maybe getting a formal diagnosis.

Has anyone gotten useful info from a biopsy many months after going gluten free? Has anyone's biopsy late in the game still shown damage?

I'm 33 and think I might have had celiac disease since infancy, in case that's relevant.

My mom and I are both in the process of getting diagnosed with celiac disease. Just wondering how uncommon it would be for both my mom and my dad to have celiac. Wondering how much info I should try to pass on to him (mom and dad are divorced).

Chakra2

I dropped my fish oil because of the soy, too. Isn't d-alpha tocopherol vitamin e from soy?

I found out about my gluten intolerance (or celiac disease -- still don't know which) after getting very sick after the birth of my first baby. I have read on an NIH site that childbirth can trigger autoimmune diseases or make them worse so that might be what is happening to you.

I have also read that PCOS, fertility issues and Hashimoto's can be related to celiac disease and gluten intolerance. So maybe keep exploring the connection there.

For what it's worth, I felt allergic to everything and totally haywire for the first 4-5 months of being gluten free. I think that was partly because it took time to figure out the diet and partly because it just took time for my immune system and intestines to chill out. Eliminating gluten, dairy, soy, corn and nightshades (including potatoes) really helped me, as did working with a holistic nutritionist to figure out how to get enough nutrition to support the healing process. We also made our whole house gluten-free so that I don't have to worry about cross-contamination from hubby or babe's food. Oh and this was hard for me but I recently realized that eating out and eating at other people's houses was causing me to get sick over and over again, even if my food didn't actually have gluten in it. I did an experiment of just eating food from home for 3 weeks and all of the sudden -- no mysterious symptoms!! I'm hoping to get back to eating out once I'm a little more healed up. Last but not least, getting rid of all bath products for myself and my son that had gluten or soy really made a difference too. It seemed like I was "taking this too far" at that point but I couldn't argue with the results.

Good luck getting this figured out!

I've been vegetarian for 19 years and just discovered my gluten issue in the past few months. I added fish and seafood back to my diet 3 years ago when I got pregnant so that my husband could feel comfortable about the baby's nutrition. When I found out after my son was born that I had celiac disease or gluten intolerance, I decided to keep eating fish just to help with my nutrition and healing. I have been interested to read about traditional foods and paleo diets in relation to celiac healing. The Weston A Price Foundation website has info about that. I have not thought about eating meat because I feel okay with just fish for now but their ideas were interesting to me.

Also, after going gluten- free I learned that I still can't digest dairy and am allergic to soy and several nuts. Wow has my diet done a 180!! It has been getting easier and easier though. Good luck making the transition!

Your post caught my eye. I had my first baby in 2008 and it was only after the pregnancy that I started to really get sick. I have also been vegetarian for 19 years (but eating fish now). I'd like to share what my experience has been in case anything fits with what you're going through.

First,

Steve-- your potatoes and beef comment struck a chord. I have a similar thought about a very emotional time in my life sensitizing me to certain foods. Have you ever looked into NAET or any acupuncture- based allergy treatment program? Some integrative medicine MDs that I trust recommend NAET and from what I've read it helps "clear" the

physical and emotional energies contributing to food sensitivities. I don't know if it's nuts or if it works (or both!) but the concept intrigued me. I think I might actually post a topic here to see if anyone's tried it. I don't think NAET claims to cure gluten sensitivity but I've thought it sounded intriguing as a way to reduce some of those secondary sensitivities.

For years after I became vegetarian my grandmother would ask my mom why I wouldn't eat chicken salad -- "that's a salad, isn't it?" I think she really was trying hard to find things for me to eat but that comment always made me laugh.

I'm 33 and it was my joint pain that finally got me worried enough to see a doctor. I thought for sure I had RA-- I couldn't believe how many of my joints were hurting, even toes and fingers. I think I have had celiac or gluten intolerance all my life (lots of GI issues startng in infancy ) but have only recently found out about it. My knees and hips started to hurt as a 13-14 year old and I was told that was just because a was a girl playing sports. I have always liked to stay active so I just exercised through the pain for the past 20 yrs. Maybe not the best plan but docs kept telling me hurting was inevitable if I kept running. Um, NOT TRUE!!!!! My joints are pain free for weeks at a time if I avoid gluten, dairy, corn, soy and nightshades. The nightshades has actually been the biggest bummer but it helps a lot to not eat those foods. I was mildly glutened today and within 2-3 hours my joints were really sore. It's great to know what causes it now, though, and to know that it will pass in a day or so. Now I know I can take it easy on the days I feel pain and be back to feeling good soon. Before sinc everyone told me the pain was inevitable I just pushed through. Grrrrrrrrr ... doctors. I even had knee surgery -- pointless. Changing my diet fixed my knee in days. The surgery did zip. Now I want to shout from the mountaintop about trying dietary changes for joint pain before resigning yourself to less activity or having surgery. Happy bending to all!

Dropping gluten definitely improved my complexion, but it took dropping dairy and soy to get it 100% clear. Even soy oil in vitamins makes me break out (i stopped taking some of my favorite supplements, including fish oil, for that reason). I also switched to using baking soda, apple cider vinegar, and Calfornia Baby products on my face and that seemed to help too. I discovered that all of my other face soap and cream had either gluten or soy in them.

Here's my 2 cents worth: My 2 yr old and I eliminated gluten, dairy, soy and corn 6 months ago. I thought things were pretty good for us but once I switched both of us to gluten and soy-free bath products I saw even more improvement. His face rashes appeared way less often, he slept better, and had even less diarrhea than before. My mood and energy improved too, along with my few lingering GI issues. Once I looked into it, I realized that almost every bath product I was using had either gluten or soy (shampoo, lotion, lip gloss, face cream, son's shampoo, son's lotion, deodorant -- I mean everything!!) It makes sense to me that those things could get ingested accidentally and cause symptoms. We use California Baby shampoo, conditioner and lotion now, even though I'm not crazy about the scent (they sell it at Target and Whole Foods where I live).

Also, I think I read that your son had been gluten free for 10 days. I have read on this site that it takes weeks or months to truly heal and that you might just get weird reactions to all kinds of things during that time period. Maybe you're already doing this but you might also want to try dropping other hard-to-tolerate foods at least during this initial stage (dairy, soy, corn).

Hope things improve!

My husband and I were gently debating this topic the other day. Both my 2 yr old and I went gluten-free before celiac testing (and got life-changing results) so now my husband wonders if the kiddo and I react so strongly to gluten just because we've been avoiding it. I understand that people with true gluten intolerance can get more sensitve to it the longer they stay away so I'm really trying to ask about a different phenomenon: what happens if you don't start off with any gluten problem, but then you avoid gluten for a long time and try to eat it again? Could "normal" people become gluten-sensitive just by avoiding it?

Does anyone else here know that they have 2 copies of the DQ2.2 gene? I would be interested to know more about what your symptoms were/are and what the age of onset was for those symptoms. And if we're related! (ha, ha)

I had daily vomiting as an infant, bladder infections and constipation as a child, waning of symptoms until adolesence, joint pain/mild digestive issues/lots of belching and gas as a teenager, mild anemia/low good cholesterol/severe D alternating with C/ sudden dairy intolerance after college, waning of symptoms in grad school (except by then I thought of D and C cycles as normal digestion), then at 33 one year after first child born symptoms became more problematic. Bloating, lower abdominal pain with every meal, seemed suddenly "allergic" to all kinds of food that had never bothered me before, continued hairloss long after postpartum time period, fatigue, depression, irritability, and the continuing D and C.

Just curious about how many out there have diagnosed celiac with 2.2/2.2, how many have gluten intolerance, and whether or not the severity of symptoms in either of those cases is linked to having the "lower-risk" genes.

Thanks!

Thanks to everyone for the responses. In theory I agree that I should just trust my diet results and move on. I think that in other parts of my life I've been pretty comfortable forging my own path without looking to outside sources for validation. But this process of going from feeling fine to feeling sick to feeling fine again has shredded my confidence somehow. I'm still trying to figure out why that is before I answer my own question in another thread about what my "gut" is trying to tell me!

On a more practical level, I am concerned about symptoms in parents, siblings and especially my toddler so I was hoping I could get some persuasive scientific info to help start discussions with family and pediatrician.

Laughed out loud at the BP remark--I totally see your point!

I won't have the hardcopy for a few more days, but I think I understand a little more. I have one DQ2 gene and one other gene (that is neither DQ2 nor DQ8). Are there folks here who have a similar genetic result (one DQ2 gene) and have actually developed celiac?

I do get great results on the diet but I want to know a little more about the genetic risk results too.

I just got a call from the nurse at my GI doc (not a celiac specialist). She said that my genetic test results from Prometheus lab showed that I have a DQ2/other low-risk gene which puts me at a very low risk for celiac (level two out of 8 risk levels). Does this mean I have a DQ2 or not? Is it possible to develop celiac with those results or not? Anyone else get this result?

I went gluten free for other reasons 5 months ago so my bloodwork was negative. I was hoping the genetic results would magically reveal answers to me! But the nurse who called couldn't even tell me for sure if I have a DQ2 or not. I hope someone can help me interpret this a little.

Thanks!

Chakra2