Jump to content
  • Sign Up
0
J&M's Mommy

Maybe Celiac Realized Thru Dh

Rate this topic

Recommended Posts

I am new to the board....My daughter is 3 and we have been dealing with SEVERE "eczema" for at least 2 years. We have been do so many doctors and prescribed so many steroids, cortisones and even anti depressants to deal with her skin. She is extremely reactive to many things and has lots of allergies. We recently have been seeing a chiropractor who suggested leaky gut and a GFSFDF diet. She has digestion issues too. She has been on this for a little over a month. She may have been exposed to gluten several times through contamination and items that I didn't realize I had to be looking for HOLY COW I didn't realize the degree of its exposure in our food!!!! She has had ups and downs. Her poops look a whole lot better, behavior has improved, paranoia(sp?) is almost gone. I have researched so much for her and this is my last option. I had her tested yesterday. They did the gene testing and the other two, not sure??? Will her test be accurate. She was on FULL gluten up until 6 weeks ago and has likely been exposed through daily lotion (TONS of Aveeno) and supplements and even food even tho most of her food has been cooked from scratch from me. What should I expect? IF she does get a positive where do I even start? I am so overwhelmed, but slightly hopeful that we may have a path to walk down to improve her path instead of suffering in the dark watching my child scratch off her skin and endure all these other issues!!!!

Thanks I have already learned a lot from this board by reading the responses to my questions thru google that have inevitably landed me here :)

Share this post


Link to post
Share on other sites

Gosh, if her stool is better and other factors too, I'd be inclined to stick to a rigorous gluten-free diet for a while and see what happens. It has to be rigorous, 98% isn't good enough, in my experience.

Many of us don't have any medical diagnosis from tests because we always came back negative, despite clear evidence that it was gluten causing our problems. Being on a reduced or gluten free diet for a few weeks pretty well guarantees that no anti body test will come back positive.

I think you are on the right track. When I started eating rigorously gluten free I began by cooking things that couldn't possibly have gluten in them, like fresh meat, fresh vegetables, fresh fruit, potatoes, rice, etc, avoiding manufactured food, because that is where most of the 'accidents' happen. There are some risks with spices but sauces are a bigger concern. I would only add things back into my diet after I'd researched them.

Best wishes. There are enough challenges being 3 years old without having to deal with DH!!

Share this post


Link to post
Share on other sites

Thank you! I was afraid of that. Basically I am committed to a gluten-free diet with her with the new knowledge of the expanse of Gluten, but was hoping for the clinical factor for dealing with the issues with my mother in law. She needs western medicine approval for everything and I NEED her buy in for my daughter's health. Sometimes going thru all of this even with my family makes me feel like a quack and I wish I had the "proof" for them. I know that sounds terrible :( Do you have DH??? What can I put on her skin for relief? Moisture? Currently we do only Aveeno and an over the counter antibiotic when the drainage is yellow. She is looking so much better. I know I have to give up the Aveeno now since I read about the oats, didn't even think of that. When we started the Monday after Easter he said minimal grains, then Wheat Free, then NO grains. To me this meant no bread or cereal and the obvious. I can't wrap my head around all of this cross contamination and gluten fillers. Why do they need Gluten in tea bags???? REALLY!?!?!?

Share this post


Link to post
Share on other sites

By the way how do I take my address off of my profile page? I don't want all of my personal info showing :-/

Share this post


Link to post
Share on other sites

By the way how do I take my address off of my profile page? I don't want all of my personal info showing :-/

Ir doesn't show. Click on me & look at my profile page. It doesn't show up. Log out & come back as a guest & click on yourself & you can see what we see.

Also - tea bags do not contain wheat. A few teas have barley in them.

Cerave is a moisturizer that told me it was gluten-free.

Share this post


Link to post
Share on other sites

Ir doesn't show. Click on me & look at my profile page. It doesn't show up. Log out & come back as a guest & click on yourself & you can see what we see.

Thanks!

Share this post


Link to post
Share on other sites

If she has it will the gene test for sure come back positive???

Share this post


Link to post
Share on other sites

Ir doesn't show. Click on me & look at my profile page. It doesn't show up. Log out & come back as a guest & click on yourself & you can see what we see.

Also - tea bags do not contain wheat. A few teas have barley in them.

Cerave is a moisturizer that told me it was gluten-free.

I read somewhere that some tea bags are made using Gluten. Who knows I have read so much in the last 3 days. Where did you buy Cerave? I couldn't find it at Target or Walgreens. One of our derms rec that.

Share this post


Link to post
Share on other sites

I read somewhere that some tea bags are made using Gluten. Who knows I have read so much in the last 3 days. Where did you buy Cerave? I couldn't find it at Target or Walgreens. One of our derms rec that.

The tea bag thing is one of the "Celiac Myths". If they were made of wheat or sealed with it, they would melt in hot water. Envelopes are not coated with wheat glue either.

I have seen it at Walmart & CVS. It is more common than it used to be. My hubs dermatologist recommended it. Its mostly white with blue letters. In a cold cream type jar.

Share this post


Link to post
Share on other sites

I use an antibiotic cream to prevent infection and moisturise the unhealthy skin that grows back over healing sores. One of the 'Polysporin' versions in Canada, and a Boots product when I'm in the UK. It has no curative effect, but it soothes and possibly prevents infection, although infection has never been much of an issue, surprisingly.

You mention a yellow discharge. I've never had such a thing from one of my DH lesions, but maybe others have. Always a thin bloody fluid.

Re: mother in law. If she see the marked improvement from eating gluten free, she should be convinced. Consider taking 'before' and 'after' pictures, they might be useful later to convince doctors etc. I wish I'd done that.

Generally I think the risk from cross contamination in rice, corn, buckwheat, quinoa is very low. You can buy oats that are wheat free, but some people claim to be sensitive to oats in any case. I seem to be able to eat them without problem.

Best wishes.

Share this post


Link to post
Share on other sites

I use an antibiotic cream to prevent infection and moisturise the unhealthy skin that grows back over healing sores. One of the 'Polysporin' versions in Canada, and a Boots product when I'm in the UK. It has no curative effect, but it soothes and possibly prevents infection, although infection has never been much of an issue, surprisingly.

You mention a yellow discharge. I've never had such a thing from one of my DH lesions, but maybe others have. Always a thin bloody fluid.

Re: mother in law. If she see the marked improvement from eating gluten free, she should be convinced. Consider taking 'before' and 'after' pictures, they might be useful later to convince doctors etc. I wish I'd done that.

Generally I think the risk from cross contamination in rice, corn, buckwheat, quinoa is very low. You can buy oats that are wheat free, but some people claim to be sensitive to oats in any case. I seem to be able to eat them without problem.

Best wishes.

Thanks! What kind of lotion do you use and how long does it typically take for you to break out when you have eaten gluten? Have you ever tried calcium supplements to keep your immune system from leaching it from your skin? My chiro suggested it for my daughter and if she misses any doses of it I see a real difference in her itching and her lesions.

Share this post


Link to post
Share on other sites

I've used various ones. I live in Canada and the UK, so they will be different brand names than in the US, I suspect. I suspect the lotions other commenters suggested will be fine. I think the big thing is to moisturise and soften, so anything that does that will work. Some sort of antibiotic property seems to be useful, in my experience anyway.

Probably hand lotion would work and you can buy it by the gallon rather than paying $10 for a little tube. As I said I opt for something that is antibiotic.

These substances won't make the itching/stinging go away, they just soothe it a little, which is better than nothing.

For me, the time between gluten exposure and a reaction varies between a couple of hours and never. Frequently the next day. Sorry I can't be more helpful. It's a very frustrating and confusing condition.

As the condition progresses or improves, the response seems to change, so one is always on a learning curve. I'm looking forward to a time when it has a dim memory, though that may be too optimistic. I'm speaking in the general sense, but of course I'm only talking about my experience.

I have no opinion on calcium supplements. I'm not a fan of chiropractors.

Share this post


Link to post
Share on other sites

I sympathise with about your mother in law. My Mum is also a doubter. She has agreed that I shouldn't eat bread and that was that.

I am awaiting my first Celiac blood test and I am hoping its positive!! I dont really care what the result is (I cant remember the last time I slept through the night without itching and/or digestive trouble) but I know that without it she will be difficult about my 8y/o son being tested & gluten-free - she (like your M-in-law) is a major part of our day-to-day life. She eats bread galore, loves gravy and porridge etc so she will find gluten-free much harder than my son and I will.

Share this post


Link to post
Share on other sites

If she has it will the gene test for sure come back positive???

Not always. Generally they only test for 2 out of possibly 27 associated genes. Also if she has been gluten free or gluten light the blood tests will be negative and there are even high rates of false negatives with folks on a full gluten diet. A derm can biopsy the area next to the active lesions to check for the antibodies but they do need to be looking for DH as the lab needs to do special tests.

Do avoid iodine in foods and supplements for a while also as iodine will keep the antibodies active in the skin. Once she has been outbreak free for a while iodine can and should be added back into the diet.

Share this post


Link to post
Share on other sites

I would like to reiterate that iodine needs to be avoided. It is oftentimes found in dairy (except organic), seafood, iodized salt, asparagus, and chips/french fries.

I totally understand the mother-in-law problem. My brother's son obviously has celiac (I, my mother, uncle, aunt, son, daughter, niece, and numerous cousins have it), and his symptoms are worsening. He's now five years old and ready to start kindergarten, but his behavior is becoming so bizarre, the school will probably have him tested for autism or bipolar. He's always been anxious and paranoid, in addition to becoming manic or depressive after eating gluten, but his digestion is worsening, too. He also has what looks like DH on his legs (my brother claims they're bug bites). Still, his parents aren't convinced he has celiac, and I think it's because they know that my sister-in-law's mother, who is from Taiwan and does all the cooking, would never adjust to cooking gluten free. She uses Taiwanese and Chinese sauces and foods that obviously contain gluten, and she's not willing to educate herself about cooking gluten free and scoffs at the idea. My brother and sister-in-law work long hours and travel for business, so they rely on the Taiwanese grandmother to care of the children....so I believe they're afraid to rock the boat and insist that she change the way she cooks. It's a sad situation. My mother is planning to speak to my brother this weekend and intends to demand that he take his son to a celiac specialist for testing.

If your child improves on a gluten-free diet, I think your mother-in-law might be convinced of its benefits. However, she will need to understand that even the smallest amount of contamination could cause a horrific response. I wish you luck!

Share this post


Link to post
Share on other sites

Fyi, I had terrible "mosquito bites" as a child...now think it was DH. I was also hyper-active (now called ADD & ADHD).

I use Dessert Essence ORGANIC coconut lotion now (be sure to buy only their ORGANIC line of products) and I used to use Curel. I also use pure organic Shea Butter, that I buy online (no real scent, which is nice). You can google search it; I get mine from sunclaytherapy dot com, which is also where I get my dry clay I put in my bath and make my "anti-itch" paste with. I mention on another post that I found it when I was told I had Herpes :rolleyes:

Share this post


Link to post
Share on other sites

My heart goes out to you and your poor little daughter. I'm forty and miserable and I can control it(now that I know what it is). I just found out today that soy sauce contains wheat product! I feel so sorry for the little boy with the Taiwanese grandmother. It's a big adjustment for us. We HAVE to learn how to eat all over again. Family members just don't get it unless they are very compassionate and see you suffering on a daily basis. Some people don't feel like adjusting. If my Mother was still alive ( who loved to cook lots of delicious things with gravy) she would do whatever it took to stop the suffering of one of her loved ones.

Even if it meant not eating those things herself.

I suggest you show your in-laws and family members this blog. Let them read all about celiacs and DH.

I have suffered since I was 13 yrs old. I just figured it out a couple of days ago. Lucky for your little girl that you found out now.

Good luck and bless her little heart and body.

Share this post


Link to post
Share on other sites

I use Vanicream and a layer of Vaseline over it. My healing sores dry out terribly and it's all I have found that does the trick, and I still have to put 3+ layers every day.

It grosses me out because I am an all-natural girl but can't find anything else that doesn't make me sting or burn.

FYI - I was put on antibiotics because my rash was so inflamed and hurt - but it wasn't infected...just DRY. so moisturize, moisturize. Plus, ended up being allergic to the antibiotics which gave me ANOTHER rash. Corticosteroids also aggravated my rash and stopped it from healing.

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
0

×