selectivefocus

I am a 37 yo female. I have 4 kids, 15, 11, 8, and 5. We are all Celiac.

I had my 5th on January 8th, so he is 14 weeks. Celiac pregnancy obviously. I got severely glutened in the hospital with him. I had a very rough 3rd trimester where I could barely eat and developed oral allergy syndrome. 

My husband eats gluten. Not much at home, our kitchen is gluten-free except for his Ramen and occasional beer which is stored elsewhere.

Two nights in a row we ate out, sushi and a burger joint, he got gluten heavy meals that he consumed leftovers of. He's very affectionate with our baby and kids in general. Our kids have been glutened previously when he has kissed them (we have fixed this). I've been glutened after him ingesting gluten and kissing him. He kisses our baby a ton. 

Yesterday and today baby suddenly has diarrhea, diaper rash, and a very rough red rash all over his face. His cradle cap which was very minor seems so much worse and inflamed. Seemingly an overnight change in his skin.

He is exclusively formula fed, same brand since birth. I know he is super young. I'm fully expecting him to have issues with gluten, though, and he will be raised gluten free because that's how we eat. Is it possible to be glutened this young? Could it be something else entirely? 

This is just a shot in the dark to see if anyone else has this problem.

My Celiac 11 year old just finished up her swim session for gym class. She's been in the pool about 4 or 5 times over the past 3 weeks. She missed the first week due to having the flu. 

Anyway, she has the worst rash right now from the stupid chlorine. It reminds me of how bad her skin was pre-diagnosis when she was 3/4 years old. All over her body, itchy and painful. I used to think "eczema" was normal until we went gluten-free and their skin cleared up almost immediately. She gets really bad DH when glutened and this is not that, but, feels important because her skin violently reacts to things she is intolerant to. We don't drink tap water and I buy dechlorination tablets for the bath. We don't do fluoride in any way. I really try to keep their chemical load very low because of this disease. 

But now it's like: she definitely cannot do a second session after Christmas with her skin this bad and I'm not sure how to address it. 

1 hour ago, Raquel2021 said:

I also have celiac and hashimotos.  Diagnosed with celiac in 2020. Hashimotos in 2022. The gluten free diet can help with Thyroid issues but it has not made Hashimotos go away for me.

Can I ask what your symptoms were?

My 11 year old Celiac daughter has recently started showing some thyroid symptoms. She got glutened pretty bad, had a decent outbreak of DH on her elbows, but she came to me about feeling like there was something stuck in her throat, and itching/bumps on the front of her throat. These symptoms definitely coincide with being glutened. I know gluten is a major inflammatory trigger for Hashi sufferers even if they don't have Celiac. I myself have had postpartum thyroiditis -- I would go hyper and then hypo. But,  that was before my own Celiac diagnosis and I don't get thyroid symptoms anymore. 

I'm going to take her to her doctor no matter what, but I'm waiting until this flare chills out for a couple weeks and her DH clears up so we can get a clear picture. Her thyroid symptoms have gone away the more this glutening flare calms down. She and I have always had such similar symptoms -- versus my other 3 kids, they all have Celiac also and present differently.

So how common is Hashimotos with Celiac, and how common is non-Hashi thyroid inflammation with Celiac?

I placed a big Katz order last week. I wanted to bring fall donuts apple picking for my family, we all have Celiac except my husband.

Their powdered donuts are my favorite-- but I seem to be reacting to them (cramps, diarrhea, DH). The only difference between the powdered donuts and the rest of the donuts I bought (4 other flavors I did not react to) is "donut sugar" which contains dextrose. Dextrose can be made from wheat or corn. 

Katz is on vacation right now so they have not responded to my inquiry. I'm someone who is definitely sensitive to <20ppm. Has anyone else had this issue?

3 hours ago, trents said:

Dole's bananas are no different than any other brand. I suspect your reaction has more to do with how ripe the banana is and the level of histamines in your body at the time of consumption. You really should look into MCAS and histamine intolerance.

I have histamine intolerance. My reaction to bananas is as if I ate gluten, and I get DH-like bumps because of it. It is not a histamine reaction (I'm well versed in that unfortunately). 

Everyone should read the replies by the scientist and doctor on this thread. The phrase "potential gliadin cross-reactivity" needs to be a more frequently used phrase. I am one of the people who reacts to oats (as are 3/4 of my children, 2 of whom also get DH, and one who also reacts to bananas as I do). 

23 minutes ago, newtonfree said:

Be wary of the "a little information is a dangerous thing" phenomenon.

As has been pointed out, bananas are I) high histamine, II) capable of causing direct food allergy, and III) capable of cross-reacting in oral allergy syndrome. Trusting a random Google hit that mentions lectins as "the answer" could blind you to the alternative answers that may be true.

Also, it's important to recognize that lectins are not "like gluten" - they are a massive and diverse family of proteins which happen to include gluten, but also include proteins found in essentially every plant food.

Banana lectins are not necessarily a bad or dangerous thing. This article reviews a bunch of specific banana lectins that have been identified as having all sorts of different properties, including one that is sort of shockingly effective at preventing HIV from entering cells.

Other plants have lectins that appear to have potent anti-inflammatory and anti-cancer properties. There's a chickpea lectin that showed remarkable action against breast cancer, and we know from epidemiological studies that vegetarian diets high in "high lectin" foods are associated with reduced rates of multiple types of cancer. Are they active parts of that? Are they unrelated bystanders? Are they bad for you, but outweighed by the good things in those foods? Those are conclusions we can't jump to without data.

I've been reading a lot about lectins since my diagnosis and am giving the AIP diet a shot, which reduces or eliminates them at first, but I'm not jumping to conclusions about them, either.

For example, when you Google many foods and ask if they contain lectins, you'll get answers based on their raw state. And yet a recent study showed that common cooking methods (boiling rice for 15 minutes, boiling beans after soaking them overnight, etc) fully denatured and inactivated the lectins in nearly all the foods they examined. A couple of notable exceptions were tomatoes and chickpeas. But most of the foods you'll see being described as "high in lectins" online might not, in fact, contain any active lectins at all if you cook them thoroughly. Many people eat flash-cooked canned beans rather than buying dry ones, soaking them, and then boiling them, but that's a preparation issue, not an issue with the food itself.

So all I'm saying is that you need to resist jumping to conclusions. In this very thread, I wondered about oral allergy syndrome and my reaction to bananas, but it was then pointed out to me that my reaction to boiled plantain didn't sound like OAS, since the relevant proteins, like the lectins in the study linked above, generally break down with thorough cooking. So I'm taking note of my reaction and will continue to put it into context with other things I notice as I challenge different foods and slowly heal from a lifetime of assaulting my gut with gluten.

Celiac disease is in no way a one size fits all autoimmune disease and not thinking outside the box when it comes to food problems will be detrimental in the long run. For me, my banana symptoms cause DH-like bumps, which makes me think that it's a lectin/gluten protein confusion. Symptoms and context matters in ALL situations. Basically, tl:dr, I agree with you. 

1 hour ago, newtonfree said:

All solid advice. I do generally treat everything I have to eliminate right now as "eliminated...for now" with the hope that, as I heal, they may return (because I know for certain that at least some of them should return, in some form and/or quantity).

But you're right that it's like a hurricane, and I'm in the cleanup and rebuilding process.

My wife has gone full gluten-free with me and we have eliminated all identifiable possible sources of CC from the house to make sure that I can heal. I'm starting off super narrow with my diet, sticking with certified gluten-free whole food ingredients and cooking everything at home, slowly testing out and broadening my diet so that I can be sure what it is I'm reacting to if I do have a mini-flare.

I love hearing about supportive spouses!!! Good luck to you on your journey. 😊

23 minutes ago, newtonfree said:

Flippin' heck. The tongue itching/burning and throat symptoms are very similar to what I get, and I also had a mini flare of my DH recently, around the same time as the OAS type symptoms. I basically pared my diet down to a low FODMAP AIP diet recently in order to try to settle everything down, as I'm recently diagnosed and haven't been gluten-free terribly long (cut out bulk wheat 6 months ago which helped a lot, but only went full gluten-free upon my diagnosis a few weeks ago). But bananas are big in AIP and I love them (and plantains) so I upped my intake, and the oral symptoms got really bad along with the DH.

I've been taking daily antihistamines lately regardless, because between these oral symptoms and the general ragweed pollen allergy, it seemed like a good idea.

Oh, and of course, I've cut out the bananas and plantains. With a tear in my eye.

So, with OAS, things have to be super cooked. I only know with my kid that when we make fajitas with peppers and onions, she can eat them as long as they are really cooked down, whereas she reacts to raw pepper. 

The banana thing may not be OAS. I really think there is a protein thing going on. Everyone is different with their intolerances. You are still fresh off the gluten boat so your body is still healing. I always say that undiagnosed Celiac is a massive hurricane. Once you eliminate, you have to clean up and rebuild and your body won't be the same as before. I've been gluten-free strictly for 3 years, and I can finally tolerate certain things again. Other things I'll never be able to enjoy again without getting sick. You may find further in your healing journey you can enjoy bananas again. Also be sure that all of your personal care products are gluten-free and you're not getting cross contaminated. No shared appliances etc.

10 hours ago, newtonfree said:

I just started reacting to bananas - strongly - this past week. Was eating 1-2 a day for months on end before that.

For me, the symptoms were scratchy throat, painfully swollen tastebuds, postnasal drip, acid reflux, and upset stomach.

Did several tests of withdrawing and reintroducing them while changing nothing else, and it's clearly the bananas. Some of those symptoms (the reflux and upset stomach) are very similar to my gluten symptoms.

I think I found the connection. Oral allergy syndrome, also called pollen allergy syndrome. Bananas have a protein that is quite similar to ragweed pollen, and I have a ragweed allergy.

Perhaps noteworthy is the fact that ragweed season just started where I live, exactly at the time the bananas started causing me trouble.

I'm hoping that this is just related to my immune system being on alert for ragweed already with so much of it in the air right now, and that it'll settle back down when I'm no longer being exposed to ragweed, but apparently for some people it's a year-round thing.

I'm very bummed about it. I love bananas and plantains (which did it even worse than bananas - I ate a plain plantain and my mouth felt like it was burning afterward, kind of like when you over-pepper food).

It may be oral allergy syndrome. I take benadryl every single day because I have mast cell issues. My Celiac 14 year old daughter has oral allergy syndrome and reacts to almost all raw fruits and veggies. She also has an anaphylactic almond/cashew allergy. You have to be careful with OAS. Her symptoms are primary which means her tongue gets itchy and throat starts closing up like anaphylaxis. 

My reaction to bananas is very similar to ingesting gluten--I get DH bumps. Which sucks, because I love bananas and I'm pregnant. I'd be eating 3 a day if I could.

The Quaker ones. They're not certified. I ate literally an entire sleeve of the caramel ones. When I got the trademark migraine the next morning, I knew I screwed up. 

I had joint pain last night (day 2) and today is day 3 and I'm so freaking irrationally angry. I don't always get the anger symptom but i hate it. I am usually the picture of composure and go with the flow and calm and happiness. It reminds me of how I used to feel all the time before diagnosis. Negative and angry and the smallest things would set me off. I feel so much shame about knowing I used to feel/act like that all the time. I know it is the gluten and it will go away but I just hate it SO MUCH.

I have the Celiac gene from my father. It runs heavy on his side of the family. He is one the nastiest, angriest, most negative people in the entire world. He would never entertain the idea that he has Celiac though, he doesn't think it's real. 

Angry outbursts were one of my 7 year old's biggest symptoms. She turned into a tyrannical demon who would scream and throw things and slam doors.

So I react to bananas as well. I don't think it's latex related. I have read a couple things about how the proteins in ripe bananas are similar to gluten proteins. Do with that what you will...You're not crazy, though. Stop eating the bananas.

I live in a sterile gluten-free home...and I react to banana bread, ripe bananas in smoothies, etc. I don't react to avocado. 

A long rant.

I am 20 weeks pregnant. This is my first true Celiac pregnancy. My last baby I was "mostly" gluten free--but at this point with her I could eat all the things that gave me trouble not pregnant, like bananas and sweet bell peppers and milk. I was still cheating occasionally like an idiot back in 2018 so my immune system was still focused on the gluten monster probably. 

I get DH. I know all about the iodine correlation. So why the hell are bananas triggering itchy bumps that seem exactly like DH? The most information on this that I have found has to do with lectin proteins. I don't do well with lectins in general. Can someone explain this?

I have been very strictly gluten free for 3 years. I don't eat out. My entire house is gluten-free because all of my kids are Celiac.

I seem to be sensitive under 20ppm so unless it's certified, I can't eat it. Last time I reacted was to Ore Ida tater tots. The stiff neck and 3 day migraine were not worth some tots. My 11 year old got a headache and some belly pain but otherwise enjoyed them.

All of my food allergies/intolerances are worse this pregnancy. My body has just freaked out.  I expected the opposite. Quite frankly, eating sucks. Like I'm really struggling with finding foods that will help me grow this baby. I was doing well with shepherds pie, until my body decided corn was a problem. My food allergy symptoms have gotten so much worse and it's crazy to me. Eggs, beef, almost all dairy, soy in excess (more than once a month), salicylates--most fruits and veggies are just not feasible. I can tolerate canned peaches and pineapple and occasionally some tomato. Fresh garden cucumbers, which I have been looking forward to all summer, mess my sinuses up almost instantly and make me feel terrible. Eating is such a chore. 

33 minutes ago, Viv1990 said:

Omg! I just looked up the lectin part and I have peanuts every morning. I'm definitely going to try this!!

I've always had problems with dairy also - even lactose free. I was trying to add greek yogurt back because I'm worried about calcium deficiency, but maybe I'll start shopping for supplements...

 

Yeah I'll second the lectins. I can't tolerate them and I used to. I can have peanut butter only occasionally. 

OP, lactase, the enzyme that digests lactose, is made in the tips of the villi. When the villi are injured, lactase is not made. Celiac also increases issues with the pancreas and enzyme production. My enzymes were super low when my allergist tested, and my celiac 9 year old had the same issue. It's really just a game of trial and error. I do better on a totally grain, whey, soy, nut and legume free diet. I can't tolerate digestive enzymes because they are made from aspergillus niger, which is black mold, and I have a mold allergy. It's crazy how messed up celiacs whole digestive systems are. I also have major issues with fructose. So. Trial and error. 

2 hours ago, Viv1990 said:

Hi, thank you for telling me! In your experience, is there anything else I should avoid? I always knew that dairy would worsen my breakouts but never knew it had the same effect on DH 

I myself have to limit dairy except for butter and cream. Seafood, like shellfish, is also very high in iodine. And watch for supplements as well. My daughter's DH is knees/elbows and armpits. She does okay with organic whole milk and occasional cheese, she drinks that daily. Organic dairy has less iodine than conventional. None of us can eat yogurt though. 

If your DH is really bad, limit all dairy except butter and cream for now, and don't take any supplements with iodine, and NO OATS. Until your DH is in remission, and then you can see if you can tolerate organic milk and cheese.

Just chiming in to say this is 100% iodine triggered by the yogurt. Yogurt is so high in iodine. It also triggers my psoriasis! Not just the DH. My celiac daughter stayed in a DH flare for FOREVER because of iodine in dairy, specifically yogurt. I researched everything until I found out what was going on. 

7 minutes ago, Scott Adams said:

Of course we can't officially diagnose you with just this image, however, it does look a lot like the small spot of DH that I had on the back on my hand (until it was horribly sunburned and never came back!).

It would be important for her to get a celiac disease blood screening, and see a dermatologist for a skin biopsy that looks specifically for DH (must be done correctly).

She has been diagnosed through blood test. But the DH that she had before looked nothing like it. That's why I'm confused. Our household is strictly gluten-free so I'm just confused what caused her to flare.

This is on my 8 year old daughter. She gets DH on her elbows and knees but it's much more individual bubbles than something like this. This is in her groin area, and it burns/stings very badly, not itchy whatsoever. Limiting dairy is helping (iodine). It started after I gave her a horizon organic milk box in her lunch. It has added D3 and doesn't say gluten-free anywhere on the box but it's just milk. Almost everything she eats is Certified and she doesn't eat yogurt or anything. After meticulously going over everything she ate this was the only different thing besides her teacher giving her fruit snacks (that said gluten-free on the bag).

Remove all sources of iodine from your diet. Iodine will keep you flared. You can reintroduce small amounts once you are clear.

How long did it take for stomach pain to stop? What was your experience?

Background:

Myself and my 3 daughters were gluten free from October 2017 to Thanksgiving 2019. We have never been diagnosed as Celiac although it runs strongly on my dad's side. A lot of our issues were solved but other ones cropped up.

I noticed my 8 year old developed a bumpy itchy rash on her elbow after eating gluten for a few months (February 2020). It was very similar to the rash she developed on her knees after a 6 week trial of gluten free when I reintroduced her to gluten back in 2017. I determined this was likely DH. In the past 2 weeks she has developed a burning itchy rash in her armpits that seems to come and go.

In April of this year, she starts complaining of stomach and urinary pain. It's been a nightmare 3 months. She was treated for a uti but it never fully went away. Then she came down with salmonella poisoning and was hospitalized for 4 days. Then she ended up with a salmonella UTI. She's had major yeast issues and chronic periumbilical stomach pain and urethritis that is very persistent. When we were in the hospital in May, the dr kept asking if she had an underlying condition like crohn's because she was in such excruciating pain. I said celiac runs on my dads side. They refused to test. Finally after trying to heal her at home for 2 months and judging her food reactions, I had her pcm do a celiac panel. Everything was normal except for Tissue Transglutaminase Ab IgG. The result was a 6 and the range was 0-5. So, a "weak positive".

I know with celiac you have to be biopsied for diagnosis most of the time. I really have no interest in doing this for my child. Would you consider this "gluten sensitive" or something more? Is her villi damaged given the "weak positive"?

Did anyone have swollen mesenteric lymph nodes, or any swollen lymph nodes in the gut, at or before diagnosis? TIA!

6 hours ago, Scott Adams said:

Ok, I've not been pregnant but still want to see how things are going, and did you find out anything new that you can share that might help others?

IUGR is relatively common in Celiac pregnant women, although my doctor has been unconcerned about it. I'm an informed patient however.

After that appointment I stopped eating ALL grains, with the exception of simple kneads bread, which is a fermented sourdough but has no oats, rice, corn or eggs. (Sidebar: it's an excellent bread and I recommend it to everyone, you can order it online). I increased my protein to at least 80g a day, and I started drinking 4 16oz glasses of organic whole milk per day, as well as 3 organic bananas per day. I stopped eating any food that was not prepared in my house. I don't touch any processed gluten free foods. Not pasta, not waffles, nothing in a box.

At my 32 week appointment her growth had totally caught up. Her head and femur were measuring above average while her abdominal measurement was spot on at 32 weeks. So in 4 weeks, she went from measuring 25 weeks for abdominal circumference to measuring 32 weeks. That is a massive jump in growth. I'm still having weekly ultrasounds and biophysical profiles. I'm having a csection so as long as I can get her to 7lbs and 39 weeks we will be good.

Celiac is such a complicated disease, ESPECIALLY while pregnant. My doctor told me there was "not much I could do". I didn't believe that-- your baby gets nutrients from you. I didn't have any diagnosed placental issues, so I either wasn't eating the right foods or my absorption was compromised or both. I researched and researched and found the Dr. Brewer pregnancy diet (which most women should be educated on--similar to the Weston Price pregnancy and fertility diet). I tailored that to my specific needs and it has made a massive difference.

Whether you are pregnant or not, if you are still sick although you have adopted a "gluten free diet", eliminating all grains unless naturally fermented is highly recommended. Many celiacs stay sick because they keep eating oats or brown rice etc. (Or processed boxed "gluten free" items) and their proteins are extremely similar to gliadin. Many celiacs also have intolerances to soy, xanthan gum, tapioca, and starches like corn and arrowroot which they may not even realize. ALL celiacs should have an extensive food allergy panel done after they have been gluten free for a few months. Gluten is just the tip of the iceberg.

Does anyone have experience with Celiac during pregnancy?

This is my first pregnancy since being diagnosed in January 2017. I went for a growth scan at 28 weeks (10 days ago) and it looks like she has asymmetrical IUGR. This is my 4th baby. I have never had any issues like this. Her abdomen is measuring about 3 weeks behind.

I should add that I have been glutened a few times by accident. I'm now strictly eating at home only for this reason.

I have changed my diet since that scan and I'm really pushing clean protein (like chicken breast) and organic whole milk. I know my gut is doing ok because the milk is not bothering me at all. I have been avoiding dairy up until this point but after researching IUGR and nutrition changed my diet. I think I might not have been getting the nutrition I needed.

Please only respond if you have been pregnant with Celiac. Thanks.

On 1/18/2018 at 10:02 AM, cyclinglady said:

Teresa, 

You posted this same question yesterday.  You did get a response, but you did not answer the questions asked which might help you.  We can not diagnose you over the internet.  We are not doctors, but just people who can not consume gluten.  We share tips, our personal experiences, and ask questions about the gluten free diet.  

If you have or suspect DH, read through the DH section for coping strategies.  Keep to the gluten free diet.  Talk to your doctor!  It might NOT even be related to celiac disease!  

She might not have responses enabled to her posts. I didn't realize you had to enable responses for every individual post and was not getting emails and I thought no one was responding to me.