Something Is Still Not Right :(

[ChristyL]

My daughter just turned 2 and has been gluten free for 6 months. She's put the weight back on and is most definitely healthier than before she got diagnosed. But I can tell that something is just not right. A couple of weeks ago we decided we had no choice but to make the entire house gluten-free (tough considering my 7 yr old son has no trouble with gluten and we can barely afford to feed all of us gluten-free foods). I had hoped cross contamination was the issue but I still feel like something is off. She only sleeps thru the night about half the time and wakes up crying. Also, when I'm putting her to sleep I can feel and hear her tummy rumbling. She also has a hard time pooping. I just started her on probiotics but I know it will be a while before I see any results. I tried giving her Almond Milk but she had terrible stomach pain from it. So I've just started her on a dairy free program (using Lactaid) but I still don't see a difference. Then a couple days ago she developed a rash on her chest. It looked like prickly heat and I tend to dress her too warmly at night so I didn't think much of it. But it's still there and I think it might even be worse. I really feel like I am loosing my mind I am so worried about her. Her symptoms aren't that serious so I'm wondering could it just be that her tummy is still healing? Or is she developing an intolerance or allergy? Any thoughts or suggestions would be greatly appreciated.

[tarnalberry]

I'm confused on dairy free but using lactaid. Lactaid is for going lactose free, which is not the same as dairy free, which around here especially refers to casein free.

I think you're right to follow your intuition and see if there are other food issues.

Is she in a daycare or preschool that has playdoh or other gluten containing things around her?

[GlutenFreeManna]

What do you feed her mostly? We might be able to help you figure out if somehting else is bothering her or if there is a product you are using that is not gluten-free.

[CrunchyChristianMama]

I would guess there is another intolerance there. My DD is also sensitive to sunflower and we would have never guessed it unless we did a food sensitivity test. When she eats it she has a horrible time falling asleep and will wake up several times in the night.

[ChristyL]

Yikes. I'm glad I posted. I am obviously uneducated about dairy vs. lactose. I thought they were relatively the same. Now I'm really confused. All she will eat are eggs (which I was making with butter and milk and cheese ((Lucerne mexican 4 chesse blend or giant eagle brand or sargento brand)) until recently when I started making them with original pam and lactaid), cheese (used to be Sargento cheese sticks but yesterday I tried Veggie shreds), sliced deli turkey and ham (Giant Eagle brand sliced on the dedicated slicer), noodles (Tinkyada), Hunts traditional spaghetti sauce, gluten-free muffins from a box mix by King Author, strawberries and bananas, and YoKids yogurt. Oh, and mashed potatoes. Any of these foods raise a red flag to you guys? She also drank whole milk until I started the Lactaid fiasco. She has never been able to handle any type of processed gluten-free foods. I'm basically shopping the perimeter of the grocery store. When she first got diagnosed I remember thinking "I can't believe all she can eat are the things marked gluten free." Now I think "Life would be so much easier if she could eat anything marked gluten free". It's amazing how my outlook has changed. I think her rash may have gotten a smidge better today since I stopped the pho-dairy-free thing. I'll see how she is tonight at bedtime (that's when he stomach starts rumbling). Gas-x or Mylicon seem to help. Have you ever heard of an allergy to Lactaid or veggie cheese? I saw online someone mentioned that their child could only handle skim milk and not whole. Maybe I'll try that tonight?

I really appreciate all of your help:)

[ChristyL]

Sorry, two more things..... No, she's not in daycare. She's always with me. And I was wondering about the sensitivity test someone mentioned. How is that done? Is it different from the RAST test? She hasn't had either test.

[cahill]

Yikes. I'm glad I posted. I am obviously uneducated about dairy vs. lactose. I thought they were relatively the same. Now I'm really confused. All she will eat are eggs (which I was making with butter and milk and cheese ((Lucerne mexican 4 chesse blend or giant eagle brand or sargento brand)) until recently when I started making them with original pam and lactaid), cheese (used to be Sargento cheese sticks but yesterday I tried Veggie shreds), sliced deli turkey and ham (Giant Eagle brand sliced on the dedicated slicer), noodles (Tinkyada), Hunts traditional spaghetti sauce, gluten-free muffins from a box mix by King Author, strawberries and bananas, and YoKids yogurt. Oh, and mashed potatoes. Any of these foods raise a red flag to you guys? She also drank whole milk until I started the Lactaid fiasco. She has never been able to handle any type of processed gluten-free foods. I'm basically shopping the perimeter of the grocery store. When she first got diagnosed I remember thinking "I can't believe all she can eat are the things marked gluten free." Now I think "Life would be so much easier if she could eat anything marked gluten free". It's amazing how my outlook has changed. I think her rash may have gotten a smidge better today since I stopped the pho-dairy-free thing. I'll see how she is tonight at bedtime (that's when he stomach starts rumbling). Gas-x or Mylicon seem to help. Have you ever heard of an allergy to Lactaid or veggie cheese? I saw online someone mentioned that their child could only handle skim milk and not whole. Maybe I'll try that tonight?

I really appreciate all of your help:)

Is there soy in the veggie cheese ???

I have never looked at yokids yogurt is it gluten free?

[T.H.]

Okay, here's just a slew of things that come to mind.

I would ditch the dairy - many new celiacs are lactose or dairy intolerant, and there is just so much dairy in your little one's diet. The cheese, the butter, the milk, the yogurt, what's in the muffins and mashed potatoes, even the veggie shreds - they have dairy added too.

Kind of defeats the purpose of the veggie shreds, huh? No idea what they were thinking with their choice of ingredients, there, jeesh.

The lunch meat I would ditch, too, and try for whole meat like chicken, fish, beef, that sort of thing. They can be higher in nitrates/nitrites and that could be an issue, possibly.

Tinkyada seems to do well with almost all Celiacs, so I would think that's okay. Hunts is good for many - if you were worried about it, you could always get tomatoes, puree them, and cook them with a few spices for the little one.

She has never been able to handle any type of processed gluten-free foods.

Does she get sick from them? This was the case with myself as well. Turns out I reacted to an ingredient that is more common, and less processed, in gluten-free foods. I have also met a little girl who would get sick whenever she would eat the gluten-free foods at our house, because she turned out to react to one of the ingredients in it, too.

So, foods I've seen celiacs react to more are dairy, corn, nightshades, and soy.

Foods that might be more prevalent in gluten-free foods are sugar cane (cane juice), potato(starch), xanthan gum or other gums (common gut issues with these), corn, and eggs.

Or possibly some other flours/grains that are uncommon in our normal diets. Tapioca starch, for example.

Gas-x or Mylicon seem to help.

That seems to me to imply dairy or the xanthan gum, potentially - gas would definitely be a side effect of these. Although Imagine some other intolerances/allergies could cause this, too.

[GlutenFreeManna]

Yikes. I'm glad I posted. I am obviously uneducated about dairy vs. lactose. I thought they were relatively the same. Now I'm really confused. All she will eat are eggs (which I was making with butter and milk and cheese ((Lucerne mexican 4 chesse blend or giant eagle brand or sargento brand)) until recently when I started making them with original pam and lactaid), cheese (used to be Sargento cheese sticks but yesterday I tried Veggie shreds), sliced deli turkey and ham (Giant Eagle brand sliced on the dedicated slicer), noodles (Tinkyada), Hunts traditional spaghetti sauce, gluten-free muffins from a box mix by King Author, strawberries and bananas, and YoKids yogurt. Oh, and mashed potatoes. Any of these foods raise a red flag to you guys? She also drank whole milk until I started the Lactaid fiasco. She has never been able to handle any type of processed gluten-free foods. I'm basically shopping the perimeter of the grocery store. When she first got diagnosed I remember thinking "I can't believe all she can eat are the things marked gluten free." Now I think "Life would be so much easier if she could eat anything marked gluten free". It's amazing how my outlook has changed. I think her rash may have gotten a smidge better today since I stopped the pho-dairy-free thing. I'll see how she is tonight at bedtime (that's when he stomach starts rumbling). Gas-x or Mylicon seem to help. Have you ever heard of an allergy to Lactaid or veggie cheese? I saw online someone mentioned that their child could only handle skim milk and not whole. Maybe I'll try that tonight?

I really appreciate all of your help:)

It sounds like you need to take her off of ALL milk and all products with milk in them. It's very telling that she will mostly only eat cheese and other dairy products. Some people with dairy sensitivities CRAVE cheese and milk. That's all they want. I have developed a true milk allergy recently and even I craved cheese like it was a drug my first week I had to cut it out--and thet's really scary considering my reactions to milk products was near deadly--swollen tongue and tingling lips. Back to your little one, if you take her off of all dairy expect some major meltdowns and crankiness for a few days. She may be addicted to it even though it is giving her stomach discomfort and making it hard for her to sleep. You need ot read the labels of everything you give her. Fortunately milk has to be labeled (assuming you are in the US). Some ideas for food you could try that she might like--cooked baby carrots, green beans, baked sweet potatoes, little pieces of chicken (NOT lunch meat, cook up some BLSL chicken breast and cut it up for her), and of course all the fruits she likes. The only thing from what you listed that MIGHT cause a rash would be strawberries. I have heard of some babies that are allergic to strawberies getting a rash from them. Try keeping a food journal and see if you notice a pattern.

[katerzz]

First off... get to an allergist. My son was diagnosed with Celiacs at 18 months but the first step the doctor wanted was for him to be tested. He had the skin prick test and it helped rule out a lot of stuff (including finding out he was NOT allergic to diary like originally thought)

I would get the allergy tests done as soon as possible. I would NOT ditch diary unless I absolutely had too. My son (will be 3 in July) eats so much diary and thank god for that it's hard enough to feed him gluten free, I'd want hard evidence that diary is a problem before I took him off it. Which, we went through that a year ago when he was first diagnosed. He went almost 8 months "diary free" before being diagnosed with celiacs. The gastro doctor was shocked that he hadn't been tested for a diary allergy. We were blown away when we found out he did not have to go diary free. Took awhile to break him of Soy milk. We went through he was lactose intolerant, no allergic to dairy to finally finding out he had celiacs.

It takes months for them to heal. My gastro doctor told us it could take 12-18 months to see improvements. Diary can irritate it, but that doesnt mean they are allergic. Diary is great for little kids and IMO they crave it because they are little kids. You can get allergy results pretty much the same day or within a week. My son wasnt bothered by the skin test and it didnt take very long. Demand someone do a skin test on her.

Secondly, it took us a good month or more to see results with my son. It was 6 months before his stomach was healed up. (he had tons of ulcers on his first biopsy) It literally took at least 3-4 months to see a dramatic change as far as my sons sleeping habits, extended tummy and rumbling tummy. (and poop too) I would say 2 months after gluten-free diet (complete) he started slowly sleeping through the night. But if you see the immediate changes (appearance etc) then I would think you are on the right path and it sounds so much like what we went through. We had a follow up biopsy 5-6 months after first one to verify that our son was benefiting.... what a difference it made on the images!! It took us at least 2-3 months, up to even a year to truly be gluten free also. A year later I can guarantee you 100% that my son does not get gluten very often and when he does... we know the next day without a doubt.

Another thing is you need to get her on a multivitamin, and also as your doctor about vitamin D drops. Especially as a little one they really lack that if they are on a limited diet. I wouldn't be too worried just yet, get to an allergist and do your best with the gluten free. Going gluten-free household is way easier than worrying about cross contamination. Also to look into is if your pots are scratched, they may cause contamination. Condiments that once touched a knife that had regular bread can cause problems. We replaced all of our condiments with squeeze bottles and got a gluten-free butter that is not used with gluten bread. Same with PB&J. We also had to buy a new toaster. I didnt think any of that mattered, but it did.

Have hope.. once her tummy heals she will do great!! At the very least, don't deprive her of diary unless you absolutely have too!

[mommida]

I would try allergy testing. It is not always helpful, but it can give you a place to start. You may have to do an elimination diet. So do yourself a favor and make sure you are doing a food journal.

Don't forget peas are a highly allergen reaction and are used in gluten free foods

[katerzz]

After thinking about this more.. have you not had a follow up with the doctor?? Have them do another biopsy.... perhaps you really aren't as gluten free as you think you are. 6 months later the dr should have no problem doing a repeat biopsy and be able to help you get this under control. (along with an allergy test) Which, during the biopsy they can also test for milk allergies that wouldn't be on the skin test.

[MacieMay]

I would ditch the dairy too. My daughter could not tolerate milk. She just turned two. I can even begin to tell you the change I have seen in her since we've been dairy and gluten-free. She used to wake up in the middle of night too cry in her sleep. : ( She hasn't done that in ages. She is so much happier! Good luck!

[potatopeelingmom]

I doubt the skin prick test will give you any clear results. My son had the testing done after his first anaphylaxis and all was negative. He continued to have a second anaphylaxis 3 weeks later.

Then when we saw the GI specialist, he informed us that the skin prick test is waste of time for food ingested allergies/reactions. The skin test is more for airborn allergies.

Hope this helps,

Monica

[T.H.]

Then when we saw the GI specialist, he informed us that the skin prick test is waste of time for food ingested allergies/reactions. The skin test is more for airborn allergies.

I've had a GI doc AND an allergist say essentially the same thing: prick tests and RAST tests have a lot of false positives and false negatives, both.

Part of the problem is simply the fact that things are, well, kind of messy in the world. When the serums are made for the prick test (or to be used with the RAST test), the companies do not, say, grow strawberries by themselves in a sterile environment with no contact to any other protein. There is just too much serum to provide for our large population for them to be able to do this. So they buy their 'ingredients' for each serum. As a result, their strawberries may be contaminated with whatever they were fertilized with, whatever they came into contact with during picking, whatever they lay on and under for mulching, what they are preserved with for the serum. Molds, pollens, food derivatives, chemicals - it's all touching strawberries, which are pretty much impossible to clean completely. And the process to make the serum concentrates proteins - if it destroyed them, it would destroy the strawberry protein too - so whatever proteins or other items weren't able to be washed off the strawberry are concentrated, too. Mold, I understand, is one of the most common problem contaminants.

My allergist said flat out that there are also some allergies that we have a good handle on, and quite a few that we don't even understand, let alone know how to test for. As an example, they are finding some people who react only to a combination of foods! Eat one, they're fine. Eat two specific ones together, they react. It's really crazy.

It's also the reason a food journal is really useful. But keeping track of brands/farms of foods is part of the process, if you are really trying to figure out what in the world it could be and don't have any ideas. Some companies might process things together, or use certain chemicals or pesticides, that others don't.

Usually, if you DO run across that? Where your little one can have a food from one source and not from another, even if it's the same food? That's a good sign that it's a contaminant and not the food.

Almost forgot! The rash - have you looked at Dermatitis Herpeteformis, yet? There is a rash that some celiacs get when they come into contact with gluten, so that might be worth checking, if only to eliminate it if this is not it.

I also know that some of these folks have stated that they get the rash when they touch gluten, in the areas of touch, even if that's not studied or accepted in the medical profession as yet. So...if it's on her chest, maybe check out what soap you're using, possibly? Or if she gets it worse with some of her clothes and it's better with others?

All in all, I'd have to agree that an allergist might be very useful, but you really have to find one who is food aware - many concentrate on environmental allergies and are pretty much useless for the weird ways of food allergies.

[Anya]

My 2-year old daughter is gluten and dairy free. When I tried dairy with her in the past, I noticed also that she had issues with sleeping at night. Could the rash be exzema? A friend of mine had big issues with exzema in her kids and was able to resolve it on dairy free diet. I give my girl a mix of rice milk and coconut milk. The probiotics are extremely important. We are giving our daughter a HUGE amount, but she had also a severe c.diff infection for 9 months.

I agree with other people here that the allergy tests don't work. I did the test myself and had absolutely no allergies, yet I have very bad reactions to dairy.

I hope your little one feels better soon.

[Kelleybean]

Like others said, I would look at the dairy too. We noticed when he was younger that whenever we gave my son cow's milk at night he always woke up crying. You could always cut it out for a few days and add it back in if you don't see a difference. For yogurt you can try So Delicious coconut milk yogurt (they also make an "ice cream"). We use Earth Balance for butter. I think you said that she reacted to almond milk - that's what we use as a substitute a lot so I guess that won't work. We've been making our own cashew milk lately and that's come out really well. We haven't had much trouble cutting out dairy b/c there are a lot of substitutes out there except the cheese, although my son will eat a grilled cheese sandwich with daiya - a "cheese" made out of rice.

[domesticactivist]

Our son is 10.5 and most likely has Celiac (no biopsy, but genetics and symptoms indicate Celiac - I've posted all about it a couple months ago.) We also felt that after going gluten-free not everything was quite right. Also, since our whole family went gluten-free we all realized we'd been sensitive in one way or another to gluten! Anyway, we did more research and decided to try the GAPS Diet to heal our guts. The results have been amazing so far, for all of us. You can read about it on the website we just started at Open Original Shared Link You can click the "home" button to see our blog as well.

Basically, the GAPS Diet is aimed at restoring the health of the gut, and the balance of the bacteria and fungus that live there. By giving the gut a chance to heal, many health problems can be reduced or eliminated. When the gut is damaged (as it certainly is in a Celiac gut!), it becomes "leaky" and lets the proteins of different foods through, prompting IgG and IgA reactions. This explains why people so often are "allergic" to the foods they love the most - those are the ones the body is exposed to, and the ones that are getting through the gut! If you heal your gut, eventually many of those foods will be digestible without wrecking havoc. (note: IgE reactions are a different ball of wax).

The diet can be difficult to get started with, but especially if you are normally home a lot it's not that bad once you get in a good rhythm of making stock and fermented foods. Basically, it is completely grain-free, and the only sugars come in very highly digestible forms. Everything is homemade and based on real, organic whole foods. You start off with bone broths, add most any vegetables (fully cooked), then naturally probiotic foods like homemade sauerkraut and yogurt, honey, then egg yolks, nuts, fruit... You can read all about it in the book Gut and Psychology Syndrome by Dr. Natasha Campbell-McBride, MD. The forum wouldn't let me post a link to the book, but you can get it and other links to related on-line resources on my blog linked above. I didn't want this post to be too spammy and full of links!

[concernedmamma]

I will start with an apology that I have not read through all of the posts.....

However, I did want to say that my son (age 4 when diagnosed, symptomatic since about 6 months) took nearly a full YEAR to show improvement. We saw mild improvement after 3-4 months, then plateaued. At the one year mark it was almost amazing. We were able to see clear indicators of when he was 'glutened', had long periods of no symptoms, and he just generally felt better!

Good luck to you and I hope your little one feels better soon.

Kim