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Casein? Food Allergies? Lactose?

elfkin

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elfkin Contributor
elfkin
Posted

My son is celiac (confirmed with endoscopy and DNA and blood test). My husband has severe IBS, mild colitis, and possible gluten intolerance. My daughter has also been having issues with gluten. My question is: If they still have difficulties, even 100% strict gluten-free, where do you start looking for what else is going on? How do you know if casein is a problem? Can an allergist test for casein sensitivity? My son has positive skin test for peanut allergy. Should I have my daughter tested? My husband? My husband has been having another bad run with it all. He is very sick. I am so confused about what to do for him. He has had all sorts of testing with the GI Doc. Should we try the allergist? I am trying so hard to keep them all well! If any of you have suggestions, I am looking for ideas. I will take my kids to their well check-ups next week. I wanted to talk to him about where to go from here.

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Carriefaith Enthusiast
Carriefaith
Posted

How long have they been gluten free? Most people take about 4-5 months to start feeling better on a strict gluten free diet. I didn't start to noticing improvements until around 6 months on the diet and the rest of my symptoms starting disapearing after 1 year!

If you suspect casein intolerance, I would suggest eliminating it 100% from their diets. This means that you will have to read ingredient labels for casien. Casein can be found in anything that came from milk such as whey, sour cream, cheese, modified milk ingredients, ect. Some foods that could potentially have have casein include, chocolate, chips, butter, margerine, processed foods, gluten free breads, ect.

elfkin Contributor
elfkin
Posted
  • Author

My son has been gluten-free for over a year. My husband and daughter only for a few weeks. My son had been doing great, but in the past few months he has had reoccuring runny tummy (off and on). We did have gluten in the house (under very careful conditions), but we sanitized the entire house and eliminated any gluten at all a few weeks age. My husband had been feeling better, but has had a bad few days (okay, a bad week and a half). It is mostly for him that I wonder if more is going on. But maybe he just needs longer on the diet? I hate to take dairy away because they love it and it would be so much harder to eliminate it, but I would, of course, if it would help. I just wondered if casein intolerance or allergy had specific hallmark symptoms? I know they have problems with lactose. We drink lactaid and limit dairy. I don't know about the casein. It just seems to keep popping up with things I read. So I wondered. . .

jerseyangel Proficient
jerseyangel
Posted

Even though your husband loves the dairy foods, and I know that eliminating gluten is restrictive enough, I would suggest he try cutting the dairy foods out--at least for a month. Then see if there's any improvement. Casein can produce symptoms similar to the ones caused by gluten beacuse the casein protein is very similar to the protein in gluten. The immune system can "mistake one for the other". My doctor actually told me to go dairy free at the same time I began the gluten-free diet. (I was already df, so no problem there!)

Carriefaith Enthusiast
Carriefaith
Posted

Casein can cause symptoms very similar to gluten. I've read somewhere that the structure of casein is very similar to gluten, therefore some celiacs have problems with casein becasue their antibodies may mistake it for gluten.

Also, I am on a dairy and gluten free diet and I don't mind it at all. I actually just posted some dairy and gluten free recipes that you could use if you decide to eliminate dairy products. Here is the link:

Open Original Shared Link

jenvan Collaborator
jenvan
Posted

My rec, do not use a conventional allergist or scratch test for food intolerances. You have several options, get intolerance testing done from a lab (ie. Great Plains (i can give you their info) ), do a rotation diet and keep a food journal. I had testing done, but figured out some biggies, like dairy and soy from keeping a food/symptom journal.

loraleena Contributor
loraleena
Posted
My son has been gluten-free for over a year. My husband and daughter only for a few weeks. My son had been doing great, but in the past few months he has had reoccuring runny tummy (off and on). We did have gluten in the house (under very careful conditions), but we sanitized the entire house and eliminated any gluten at all a few weeks age. My husband had been feeling better, but has had a bad few days (okay, a bad week and a half). It is mostly for him that I wonder if more is going on. But maybe he just needs longer on the diet? I hate to take dairy away because they love it and it would be so much harder to eliminate it, but I would, of course, if it would help. I just wondered if casein intolerance or allergy had specific hallmark symptoms? I know they have problems with lactose. We drink lactaid and limit dairy. I don't know about the casein. It just seems to keep popping up with things I read. So I wondered. . .

It takes much longer than a few weeks to heal. It is common to have bad days on and off. I am at 6 months and am doing much better, but my gut is still healing. For the 1st few months I often had kind of crappy days mixed with good.

My son is celiac (confirmed with endoscopy and DNA and blood test). My husband has severe IBS, mild colitis, and possible gluten intolerance. My daughter has also been having issues with gluten. My question is: If they still have difficulties, even 100% strict gluten-free, where do you start looking for what else is going on? How do you know if casein is a problem? Can an allergist test for casein sensitivity? My son has positive skin test for peanut allergy. Should I have my daughter tested? My husband? My husband has been having another bad run with it all. He is very sick. I am so confused about what to do for him. He has had all sorts of testing with the GI Doc. Should we try the allergist? I am trying so hard to keep them all well! If any of you have suggestions, I am looking for ideas. I will take my kids to their well check-ups next week. I wanted to talk to him about where to go from here.

Try raw cheeses instead of pasterized. The pasterization kills the enzymes you need to digest thus causing lactose intolerance. Regular dairy bothers me but raw causes no problems. Go online to read about how good raw is for you and how bad pasterized dairy is! You can find raw cheeses at Whole foods and other natural food stores.

My son is celiac (confirmed with endoscopy and DNA and blood test). My husband has severe IBS, mild colitis, and possible gluten intolerance. My daughter has also been having issues with gluten. My question is: If they still have difficulties, even 100% strict gluten-free, where do you start looking for what else is going on? How do you know if casein is a problem? Can an allergist test for casein sensitivity? My son has positive skin test for peanut allergy. Should I have my daughter tested? My husband? My husband has been having another bad run with it all. He is very sick. I am so confused about what to do for him. He has had all sorts of testing with the GI Doc. Should we try the allergist? I am trying so hard to keep them all well! If any of you have suggestions, I am looking for ideas. I will take my kids to their well check-ups next week. I wanted to talk to him about where to go from here.

Try raw cheeses instead of pasterized. The pasterization kills the enzymes you need to digest thus causing lactose intolerance. Regular dairy bothers me but raw causes no problems. Go online to read about how good raw is for you and how bad pasterized dairy is! You can find raw cheeses at Whole foods and other natural food stores.

My son is celiac (confirmed with endoscopy and DNA and blood test). My husband has severe IBS, mild colitis, and possible gluten intolerance. My daughter has also been having issues with gluten. My question is: If they still have difficulties, even 100% strict gluten-free, where do you start looking for what else is going on? How do you know if casein is a problem? Can an allergist test for casein sensitivity? My son has positive skin test for peanut allergy. Should I have my daughter tested? My husband? My husband has been having another bad run with it all. He is very sick. I am so confused about what to do for him. He has had all sorts of testing with the GI Doc. Should we try the allergist? I am trying so hard to keep them all well! If any of you have suggestions, I am looking for ideas. I will take my kids to their well check-ups next week. I wanted to talk to him about where to go from here.

Try raw cheeses instead of pasterized. The pasterization kills the enzymes you need to digest thus causing lactose intolerance. Regular dairy bothers me but raw causes no problems. Go online to read about how good raw is for you and how bad pasterized dairy is! You can find raw cheeses at Whole foods and other natural food stores.

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CMCM Rising Star
CMCM
Posted
My son is celiac (confirmed with endoscopy and DNA and blood test). My husband has severe IBS, mild colitis, and possible gluten intolerance. My daughter has also been having issues with gluten. My question is: If they still have difficulties, even 100% strict gluten-free, where do you start looking for what else is going on? How do you know if casein is a problem? Can an allergist test for casein sensitivity? My son has positive skin test for peanut allergy. Should I have my daughter tested? My husband? My husband has been having another bad run with it all. He is very sick. I am so confused about what to do for him. He has had all sorts of testing with the GI Doc. Should we try the allergist? I am trying so hard to keep them all well! If any of you have suggestions, I am looking for ideas. I will take my kids to their well check-ups next week. I wanted to talk to him about where to go from here.

Allergies are a real mess to sort out because people rarely, if ever, have just one allergy or sensitivity. Having a celiac mother, I knew I had that possibility. I had GI problems and other things going on for most of my life (I'm 56). I figured for a good 25 years that I was lactose intolerant, so I minimized dairy and took lactaid pills (didn't help a whole lot). I finally decided to do the Enterolab full panel and see what I could find out. I learned that I had both a celiac and a gluten sensitive gene. Also a casein sensitivity gene, which in retrospect I should not have been so surprised at. I'm doing a further test for eggs/yeast/soy (I suspect soy is a problem too). When I'm done, I'll know a lot about how I must eat. I may have further allergies, but I believe these are the main ones for me. Personally, I think your husband would be well served by doing the Enterolab complete panel for $349. He'll learn a lot that he probably needs to know at this point in time. The stool tests make a lot more sense when you think about it....these reactions occur in the gut, so that's the place to start testing. It makes a lot more sense that just relying on blood tests. And if you are avoiding gluten/dairy etc. the blood is less likely to show anything. Enterolab stool tests can show your reactivity for up to a year after you stop eating gluten.

I did not want to get into an endless and expensive cycle of dealing with clueless doctors and doing a bunch of very expensive medical tests and other assorted procedures as they fumbled about trying to figure out my problem. I learned more from Enterolab for $349 than I would have by depending on doctors who didn't know much anyway. Thie Enterolab route cuts out all the middle men, so to speak, and gave me the answers I needed extremely quickly (in 2 weeks). Once you get to the heart of the matter, the solution is always the same: don't eat gluten (and possibly don't eat dairy).

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    • knitty kitty
      Accuracy of testing concerns

      By knitty kitty · Posted

      Welcome to the forum, @McKinleyWY, For a genetic test, you don't have to eat gluten, but this will only show if you have the genes necessary for the development of Celiac disease.  It will not show if you have active Celiac disease.   Eating gluten stimulates the production of antibodies against gluten which mistakenly attack our own bodies.  The antibodies are produced in the small intestines.  Three grams of gluten are enough to make you feel sick and ramp up anti-gluten antibody production and inflammation for two years afterwards.  However, TEN grams of gluten or more per day for two weeks is required to stimulate anti-gluten antibodies' production enough so that the anti-gluten antibodies move out of the intestines and into the bloodstream where they can be measured in blood tests.  This level of anti-gluten antibodies also causes measurable damage to the lining of the intestines as seen on biopsy samples taken during an endoscopy (the "gold standard" of Celiac diagnosis).   Since you have been experimenting with whole wheat bread in the past year or so, possibly getting cross contaminated in a mixed household, and your immune system is still so sensitized to gluten consumption, you may want to go ahead with the gluten challenge.   It can take two years absolutely gluten free for the immune system to quit reacting to gluten exposure.   Avoiding gluten most if the time, but then experimenting with whole wheat bread is a great way to keep your body in a state of inflammation and illness.  A diagnosis would help you stop playing Russian roulette with your and your children's health.      
    • trents
      Accuracy of testing concerns

      By trents · Posted

      Welcome to the celiac.com community, @McKinleyWY! There currently is no testing for celiac disease that does not require you to have been consuming generous amounts of gluten (at least 10g daily, about the amount in 4-6 slices of wheat bread) for at least two weeks and, to be certain of accurate testing, longer than that. This applies to both phases of testing, the blood antibody tests and the endoscopy with biopsy.  There is the option of genetic testing to see if you have one or both of the two genes known to provide the potential to develop celiac disease. It is not really a diagnostic measure, however, as 30-40% of the general population has one or both of these genes whereas only about 1% of the general population actually develops celiac disease. But genetic testing is valuable as a rule out measure. If you don't have either of the genes, it is highly unlikely that you can have celiac disease. Having said all that, even if you don't have celiac disease you can have NCGS (Non Celiac Gluten Sensitivity) which shares many of the same symptoms as celiac disease but does not involve and autoimmune reaction that damages the lining of the small bowel as does celiac disease. Both conditions call for the complete elimination of gluten from the diet. I hope this brings some clarity to your questions.
    • McKinleyWY
      Accuracy of testing concerns

      By McKinleyWY · Posted

      Hello all, I was diagnosed at the age of 2 as being allergic to yeast.  All my life I have avoided bread and most products containing enriched flour as they  contain yeast (when making the man made vitamins to add back in to the flour).  Within the last year or so, we discovered that even whole wheat products bother me but strangely enough I can eat gluten free bread with yeast and have no reactions.  Obviously, we have come to believe the issue is gluten not yeast.  Times continues to reinforce this as we are transitioning to a gluten free home and family.  I become quite ill when I consume even the smallest amount of gluten. How will my not having consumed breads/yeast/gluten for the better part of decades impact a biopsy or blood work?  I would love to know if it is a gluten intolerance or a genetic issue for family members but unsure of the results given my history of limited gluten intake.   I appreciate the input from those who have gone before me in experience and knowledge. Thank you all!
    • trents
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      By trents · Posted

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      Okay went online to check green mountain k cups .It was said that the regular coffees are fine but they couldn’t guarantee cross contamination.with the flavors. im trying to figure out since I eliminated the suyrup so far so good. I’m hoping. thanks it feels good to listen to other people there views.
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