How Long Do The Symptoms Of Being Glutened Last?

[Aidans Grandma]

Hello. So glad to have found this forum! I am writing this for my daughter who has a 1 year old son. They are in the process of trying to find out what is wrong with him. He has a history of weight loss, vomiting, pale stools, stomach aches and no appetite. He was hospitalized and stopped vomiting as soon as he was taken of wheat. His blood test came back negative for Coeliac Disease. The doctor wants him to gain weight before challenging him to wheat again. It has been 6 weeks on the coeliac diet and he has been doing well.

In the past 2 days he has been vomiting everything he drinks and eats, has excessive gas and his stools are getting pale again. My daughter is wondering if he could have been glutened by some fries from a restaurant. Also, can the blood test be a false negative? If he has been glutened can the symptoms start immediately and how long do the symptoms last? Thanks!!!

[crittermom]

Hi Aidan's Granma,

Welcome to the forum. The people here are great and you will get lots of help. If the fries were fried in oil that also fried any breaded items then he could have definitely been glutened through cross contamination.

We can usually tell if Katharine has been glutened within an hour or so. She will complain of a tummy ache, next bm will be white and she will get a rash on her bottom that is itchy and she will get very cranky and defiant. It usually takes around 24 -48 hours for her system to clear out once she has been glutened.

One thing that caught us was our pancake syrup. They changed the recipe and were using barley as a natural flavoring. (she doesn't like pure maple) Once we found that she got much better again. Check toothpaste, soap, shampoo, creams, chapsticks anything that comes in contact with his person. Anythhing that says "natural flavoring" in the ingredients can have hidden gluten as well.

Cooking utensils, scratched teflon pans, plastic or wood cutting boards can also be a source of CC in the kitchen. Make sure he also has his own brand new toaster that gluten containing products have never been in.

Good luck. I hope he is feeling better soon.

[Aidans Grandma]

Thanks crittermom! We can use all the info you can give us. My daughter is becoming very teary and overwhelmed with all that is going on with Aidan. She's very scared for Aidan because he is sick all the time. We're going to try and get him in to the doctor tomorrow. This is starting to look like a replay of the first time he was hospitilized. I am going to be her researcher and I will pass on all the info I get to her. She checked the ingredients in his yogurt and low and behold it says natural flavouring. We're going to have to check that out!

He has been hospitalized twice in the past 2 months. First time was for vomiting, pale stools, weight loss, distended abdomen, loss of appetite and belly aches. This is when they took him off of wheat and tested for Coeliac Disease. It was amazing, he had pancakes the first day in the hospital and immediately threw them up. After that they took him off wheat and he stopped throwing up and it took about 2 weeks for his stools to look normal again. He was also in the hospital for 4 days the week before Xmas with Bronchiolitis caused by RSV. Usually only children with compromised immune sytems get this sick from RSV. We asked him why Aidan got it and he said "He's just lucky". He lost more weight and left the hospital weighing less than the first time. I am wondering does having Coelic Disease make you more suceptible to other illnesses. In between his illnesses, he seems perfectly happy and healthy.

Is Coeliac Disease associated with any autoimmune diseases? Our family is plaqued by them.

[Ursa Major]

The celiac disease testing (both blood work and biopsy) is extremely unreliable in children under six. In children as young as Aidan trying the diet is the best and most reliable test. He got better without wheat (it would be better to make sure it is rye and barley as well, because those also contain gluten). He gets sick again when reintroducing it. That should be enough evidence to keep him off it for good, and to be VERY diligent about it.

I would absolutely not listen to the doctor and reintroduce wheat again for the sake of more testing. It will very likely come back false negative again, making the little guy terribly sick for nothing.

All of his symptoms point to celiac disease. And yes, most people with undiagnosed celiac disease will eventually develop other autoimmune diseases. Aidan might be spared that if kept on a strict gluten-free diet.

It is possible (in fact, very likely) that Aidan is getting worse again because he needs to be taken off dairy and soy (if he has those) as well, before he can really get better. If he isn't eating/drinking dairy and soy, it is likely that he was glutened by something.

Make sure his shampoo, conditioner, bubble bath, toothpaste, lotion etc. are all gluten-free as well. Oh, and don't forget things like Playdoh, it contains wheat. With little kids, everything ends up in their mouth, its inevitable.

I just realized that I didn't answer your original question. Glutening symptoms can last from a few hours up to two weeks. I am not sure why it varies so much, but even with myself I notice that.

[vanillazeis]

Hello. So glad to have found this forum! I am writing this for my daughter who has a 1 year old son. They are in the process of trying to find out what is wrong with him. He has a history of weight loss, vomiting, pale stools, stomach aches and no appetite. He was hospitalized and stopped vomiting as soon as he was taken of wheat. His blood test came back negative for Coeliac Disease. The doctor wants him to gain weight before challenging him to wheat again. It has been 6 weeks on the coeliac diet and he has been doing well.

In the past 2 days he has been vomiting everything he drinks and eats, has excessive gas and his stools are getting pale again. My daughter is wondering if he could have been glutened by some fries from a restaurant. Also, can the blood test be a false negative? If he has been glutened can the symptoms start immediately and how long do the symptoms last? Thanks!!!

Just wanted to say that i agree with Ursa Major, take him off of dairy and soy immediately. Definately Dairy. My daughter was diagnosed and went gluten-free, and about a month later all her symptoms returned. I called her dr and asked if i should remove dairy, because the ladies on here said i should. He said he thought Bayleigh was already dairy free, YES remove it immediately. Three months after that her symptoms returned, this time soy was the problem. It's very likely for someone with celiac to form additional intolerances. Lactose cannot be digested by someone with damage from celiac, so you must remove dairy until his intestines have successfully healed. Everything else i would really watch it and not overdo it. Good luck, and Welcome!

[crittermom]

I had to take Katharine off dairy as well for almost a year until she healed. She can eat it now with no problems at all. Same thing as posted, she was doing well and then the belly aches, gas, and bloating started again. We removed dairy and she was fine.

Also as far as yogurt goes, Yoplait yogurt is gluten free. We use either the original flavors or once in awhile I will buy the "kids" ones for them. We have never had a problem. Also, Arm and Hammer laundry detergent will not garuntee gluten free (katharine sucks on her blankie) and Palmolive dish soap will not garuntee gluten free either. Tide detergent, all forms, bounce dryer sheets, shout stain remover, and Joy or Dawn dish detergent are garunteed gluten free. If you are in the US these are the products we use.

[Aidans Grandma]

Hello!

I have an update on my grandson. Aidan has been gluten/wheat free since I posted. He gained weight and has been healthy. His appetite improved, poop normal, no bloating, etc. The dr. sent him for an ultra sound of his gall bladder and liver and everthing is fine. The doctor says he could have had severe gastritis and the only way to know if it was gastritis or coeliac is to challenge him with wheat. So, now that he has gained enough weight, the doctor told my daughter to start introducing wheat again. We're very hesitant about this but, we think it is the only way to find out for sure. He has now been eating a regular diet for 3 days. He did have diarrhea last night but, a normal bm this morning. He didn't eat his breakfast this morning. Don't know if he's just too busy to eat or starting to lose his appetite.

Hopefully, Aidan doesn't get sick again! There's a long line of ancestors with autoimmune diseases and I would be very happy it would skip a generation.

[Aidans Grandma]

One more thing, can the celiac come on slowly. By that I mean, could it take a few weeks or months for symptoms to appear again. Aidan seems to be doing okay after 4 days on a regular diet.

Thanks

[HappyMomof5]

Hello!

The doctor says he could have had severe gastritis and the only way to know if it was gastritis or coeliac is to challenge him with wheat. ==> No it isn't! So, now that he has gained enough weight, the doctor told my daughter to start introducing wheat again. We're very hesitant about this but, we think it is the only way to find out for sure. He has now been eating a regular diet for 3 days. He did have diarrhea last night but, a normal bm this morning. He didn't eat his breakfast this morning. Don't know if he's just too busy to eat or starting to lose his appetite.

Hopefully, Aidan doesn't get sick again! There's a long line of ancestors with autoimmune diseases and I would be very happy it would skip a generation.

I am very worried that you have reintroduced gluten into his diet after not eating it and having positive results. I know it is tempting to listen to your doctor because he has been specifically schooled in a lot of areas, but as people on these forums will tell you, that does not mean he knows a lot about Celiac or gluten intolerance.

Awareness about the dangers of gluten have only become mainstream in this country in the last ten years, and before then most doctors were taught it's a "rare genetic disorder." If your doctor is older than 30 years old, he was most likely taught this. Even if he was taught the newer statistic of affecting 1 in 133 people, he still will be looking for more advanced antibodies, not beginning ones.

By those statistics, there are 2 million Celiacs in the US alone, but only 40,000 are diagnosed. The NIH predicts gluten intolerance affect up to 10% of the population. That's a huge amount of undiagnosed people.

Secondly, your gut is a closed system. Most of the antibodies in your gut stay in your gut. They will not normally be found in a child under 6 outside the digestive system until/unless he begins to have a more severe reaction, well on his way to developing an autoimmune disease. That is why tests like the A.L.C.A.T. and Enterolab are so good. They catch the reaction while it is still on a lower level. Your doctor's tests will not.

Enterolab does stool samples, since that is where you will find antibodies to food. Antibodies to food and or self (autoantibodies) only progesses to the periphoral (arm, leg, etc.) bloodstream once you are making a much bigger reaction, and you don't want that. It starts as antibodies to gluten or gliadin (wheat), then it goes to self (anti-endomysial, anti tissue Transaminase or transglutaminase). So don't let it get that far!

Enterolab has a simple test for wheat for $99. They have other, more comprehensive tests for wheat, the gene for Celiac disease, and other things like milk and soy. I am doing my kids through them.

Also, there is the A.L.C.A.T. You may have sensitivities to other foods and not realize it. Many people on the celiac boards actually had other intolerances to other foods they didn't realize, and found them through the A.L.C.A.T. It is designed to find these "hidden" food intolerances. Baylor College of Medicine did a study on it that you may have heard of.

It's important to know that the A.L.C.A.T. is not an allergy test. A true allergy causes swelling, etc. The A.L.C.A.T. tests which foods your body seems to make IgG and IgA antibodies to, and a true allergy test is done with IgE. That may not mean anything to you, but it will to your doctor who may try to send you for an IgE skin prick test by an allergist, and that is totally a different thing.

The A.L.C.A.T. tests for multiple antigens--50 or 100 to 200 depending on what you want to spend. The website is: Open Original Shared Link They have a customer service phone number and you can talk to your doctor about a blood draw and it being covered by your insurance.

There's also a home A.L.C.A.T. fingerstick test for $99 plus a $9 test kit that tests you for 50 different foods, including wheat, from: Open Original Shared Link.

I don't know how good the fingerstick one is, but the 100 allergen one (which is a blood draw) was studied by Baylor College of Medicine. Here's a review of the article: Open Original Shared Link

This review article is mainly geared toward a reason to lose weight, which was a side effect of the exclusion of problem foods from the diet. There was also a list of 20 symptoms on the chart that included migraines, eczema, diarrhea and IBS symptoms, food cravings and so on.

Or, if you're into reading the actual scientific paper that they wrote about it, it's on their worldwide website under "studies". Google A.L.C.A.T. for the site, since I can't post it here.

If you read the article, be sure to look at 'Table 3' of before and after numbers. (The "p value" is a scientific term for "statistically significant" or in other words, did it make enough of a difference to be important.) You will be comparing the numbers in row 1 to row 4 (people using the A.L.C.A.T. to exclude problem foods), and see the difference between them and the control group who didn't exclude foods in row 2 compared to row 5. That's quite a difference! As a science-type, I like to read the paper.

Also, you know autoimmune diseases run in families. My family is choc full of them. Knowing this, and that there is a link to sensitivity to wheat with developing Celiac disease, I am worried that you are setting this child up to develop an autoimmune disease if he makes a reaction to it, yet continues to consume it.

I think it's a really good thing to think about healthwise. I don't mean to be pushy, it's just that there are other options out there for testing besides the ones your doctor is familiar with. I'm sorry this is so long, I couldn't help it.

I hope some of that helps you.

~Heather

[Aidans Grandma]

Hi Heather! Thanks for the info. Please don't be sorry for being pushy or for the lenghty post! I'm here for all the information I can get.

I did know that blood testing isn't a very reliable tool for testing a toddler. I am going to email your post to my daughter. I know she is scared he will get sick again. I never really thought about him getting other autoimmune diseases but, you are absolutley right. Your post has brought to mind something my daughter said to me a couple of weeks ago. She said " Aidan is rubbing is wrists and ankles and saying Ow". She said she was worried that he would get RA like my husband. Your post is really making me think about this and worrying me.

Thanks!!!

[FreedomforLisa]

Hi Aidan's Grandma. It's so great that you are involved in helping when Mom is so busy trying to take care of him...probably doesn't have the time that you do to research online. Anyway, my first thought is that dairy is very difficult to digest when someone has or is healing from celiac disease. If dairy has not yet been eliminated, I would suggest it. I tested positive for celiac disease antibodies test, and lactose intolerance, then after eating gluten-free for a few months I was retested for lactose intolerance and it was negative, hence I healed. My guess is that if the doctor is already on to celiac as a cause, (s)he's probably already ruled out dairy, but if (s)he didn't, (s)he should. Good luck and things will get better.

Lisa

[Aidans Grandma]

Hello Lisa. I don't mind doing all the research for my daughter. She was very stressed out about everything and also what mother with a toddler has time to be on the computer! Aidan has been on lactose free milk since this started. The only other dairy that he really eats is yogurt. And the doctor does ask her everytime she sees him if he is on lactose free milk.

Glad to hear that you figured out your own health problems. I know we will get everything figured out.

[Aidans Grandma]

Well, it's been over 3 weeks now and Aidan is still on a regular diet. Bad things are starting to happen! He's excessively gassy, hiccups, losing appetite, on and off diarrhea, huge personality change (not for the good) and my daughter was up most of the night with him because he was crying and seemed to be in pain.

Our plan is to get the Enterolab testing. She ordered the test last night and hopefully it will be here by the middle of next week. As soon, as she gets the sample he is coming off wheat again! We'll take him to the doctor again but, he has said he has done all he can and he will have to send him to a GI doctor in another city. The waiting lists for specialists in Canada are about 6 months long. We aren't willing to let him suffer that long. He'll just have to see him when he is off wheat. Besides, she doesn't want him to go through the biopsy so, if the diet works , then the diet works!

If she changes her mind about the biopsy, would they get an accurate result if he hasn't eaten wheat for 6 months?

[aikiducky]

Young children usually heal pretty fast, so I think after six months it would be very unlikely to get a positive biopsy.

Pauliina

[nmw]

Re: secondary intolerance/allergy and dairy - lactose is the sugar component of dairy. Lactose problems can be caused by the failure to digest lactose due to villi damage in the intestine, among other things. Casein is the protein component and can cause simliar issues to gluten in that it is a protein, and if one's gut is leaky, proteins passing through the intestinal membrane into the body can wreak all sorts of havoc like joint/muscle pains.

Lactose-free and dairy/casein-free are not the same thing.

I hope your little grandson doesn't have to suffer too much longer. It would break my heart for my little boy to have to go through all of that.