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Problems With Milk

holdthegluten

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holdthegluten Rising Star
holdthegluten
Posted

It's been about 7 months and i have been gluten free the entire time. It seems to be enough time for my villi to be healed, so why am i having problems with milk. (immediate gas after eating cereal, bloating and restlessness). I have not completely cut out dairy since diagnosis, but have cut back. My blood tests (ttg) came back really good, showing less than 4 on the ttg test, which proves i am following the gluten free diet very good. I never had a problem with milk prior to diagnosis. Why now! Is it Lactose or a Casein issue.

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nikki-uk Enthusiast
nikki-uk
Posted

Actually, it can take an adult up to 2 yrs for their villi to heal completely.

My hubby had been gluten-free for around 6 months before he (temporarily) acquired a problem with milk.

Milk products for him clearly gave him symptoms but he was ok with butter and cheese so he knew it was lactose.

He stayed off it for a couple of months - but kept trying to introduce small amounts.

He's ok with milk products now. :)

lmvrbaby Newbie
lmvrbaby
Posted

Hi, I have been gluten free since Feb 06 and had no problem with dairy until this past Spring. I also had cut back and after a year of gluten free the dairy started to affect me. I asked my doctor about it and he said to switch to rice milk. It is more expensive but what isn't on the gluten free diet. It helped. He also said I could try the lactose tablets that are suppose to help when you digest dairy and they do not help at all, at least for me. I love cheese so this kind of is a problem. I had cut dairy out completely for the past 3 or 4 months and tried again only to get the bloating and gas and cramps.

Maybe someone else out there has some suggestions. The rice milk isn't all that bad. Good luck.

holdthegluten Rising Star
holdthegluten
Posted
  • Author
Actually, it can take an adult up to 2 yrs for their villi to heal completely.

My hubby had been gluten-free for around 6 months before he (temporarily) acquired a problem with milk.

Milk products for him clearly gave him symptoms but he was ok with butter and cheese so he knew it was lactose.

He stayed off it for a couple of months - but kept trying to introduce small amounts.

He's ok with milk products now. :)

Thank you for your reply..........I appreciate it. I will do like your husband did and try small amounts here and there. Thanks

tarnalberry Community Regular
tarnalberry
Posted

the majority of people on this planet cannot digest lactose once they are past the age of weaning, so it may be that your body is naturally becoming lactose intolerant. (it's quite normal as we age.) additionally, if you were dairy-free (or light) for a number of months at first, your body stopped producing lactase because there was no need for it, and it'll take a while for it to produce it again.

the reaction sounds like it is more likely lactose intolerance than casein intolerance, but the only way to tell is to consume a low- or no- lactose dairy with additional lactase enzymes and see how you do.

nmw Newbie
nmw
Posted

I'm glad to see this thread. At 15 months gluten-free I've started having problems similar to, but not identical to a glutening. Through minimal trials and a food diary I realize that milk, and to some degree cheese, cream, and products w/ dairy in them are giving me fatigue, mood swings, joint pain and bloating.

I assume this is a casein intolerance and will continue my DF trial to make sure, as well as the diary and a visit to Dr. Lewey in Colorado Springs.

Needless to say I'm pretty upset because if it's not one thing it's another, and it seems even more challenging to be CF than gluten-free! :angry:

  • 3 weeks later...
Miriam3 Rookie
Miriam3
Posted

Just had this happen too! I've been gluten free for a little over a month now. I felt a lot better, but I finally realized the only times I DIDN'T feel better were after having dairy products. I don't think it's just lactose intolerance because I get bad "brain fog" and chills with ice cold hands-- besides the gas and cramps. Now I'm Gluten-free Casein-free.

Please someone tell me maybe it will stop now!!! (The new "surprises", that is...) :(

I know some people here are avoiding tons of foods, but I was a total "foodie" before this and I don't want to have to keep cutting foods out forever. I'm scared to eat soy right now because I don't think I can stand to find out I can't have that either. And cutting out eggs and yeast would push me right over the edge.

Any good words? Is Gluten-free Casein-free usually enough?

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gfpaperdoll Rookie
gfpaperdoll
Posted

Miriam, Gluten-free Casein-free should be okay. I have two DQ1 genes & have had a lifelong problem with food, so I am used to not eating things for awhile - or forever. I am Gluten-free Casein-free & still have other foods that I cannot eat, but I am also 60 now. My system is just not as forgiving as it used to be. If you have problems with other foods I suggest the "Eat right for Your Blood Type" book, not a gluten-free book but good for identifying foods that are the best for you...

personally, I do not believe that dairy is good for anyone - it just taste so darn good

sagemoon Newbie
sagemoon
Posted

I, too, found out via Enterolab that I have a casein intolerance. I did their test 10 months after going gluten-free but still suffering from joint pain, bloating and gas, and brain fog. Cutting out dairy cleared my head right up and the stomach and joint issues soon followed. Lactose intolerance supplements did zilch. (Side note: My doc suggested Beano - the pills contain wheat!)

I am a total cheese freak and have found some delicious sheep's (or ewe's) milk cheeses that may interest you. I found goat milk cheeses just too, well, 'goaty', but the sheep's milk cheeses tend to be milder. Marzolino is a great soft, mild flavored cheese, like mozarella, and melts perfectly for pizza and nachos. I buy it from iGourmet.com and justify the shipping costs by ordering several at a time. It works well this way since it is sold in its original packaging and not cut and repackaged - which is a problem with a lot of the other cheeses. It still is expensive, but totally worth it for my cheese fix. I have also found a couple of sheep's milk cheeses at Costco that are yummy and much better priced than online or at a fancy-pants store.

I thought I might be able to start to reintroduce bovine dairy after 18 months gluten-free and 8 months DF, the Enterolab test said that I was borderline on cheese casein but bad on milk casein, so I figured the fermentation process breaks down the casein molecule and I could start on fermented milk products. I had immediate problems with kefir yogurt, so that wasn't fermented enough, but can eat a nice stinky blue cheese. Can't handle provolone, so I think it is just a matter of degree of fermentation. Right now I am sticking to the sheep's milk cheeses and a stinky blue now and then (btw, there are delicious sheep blues, but they sell out fast and are really expensive). The problems I have experienced are significant enough to make me shy of too many adventures.

One very good thing, though. Since going Gluten-free Casein-free, I can drink wine again. I cut myself off many years ago because of the horrible sinus repercussions, but now find that they are insignificant. Wooha! And don't forget to take calcium supplements that include plenty of vitamin D!!

Miriam3 Rookie
Miriam3
Posted

Thank you both! Anne, I'm a Seattle girl by origin too! You know how hard it is to be there with all the great restaurants and try to be all picky. I went back a few weeks ago to visit family-- at least chefs there are nice and usually happy to help people who need to "tweak" menu. But thanks for keeping me looking on the bright side (yay, wine!). I'm working on healing my gut and then I'm going to try with the goat cheese and sheep cheese like you say. After you said that I looked up how the casein is a totally different type, so it's worth a try. It will sure make my salads better again!

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    • trents
      High TTG-IgG and Normal TTG-IgA

      By trents · Posted

      Currently, there are no tests for NCGS. Celiac disease must first be ruled out and we do have testing for celiac disease. There are two primary test modalities for diagnosing celiac disease. One involves checking for antibodies in the blood. For the person with celiac disease, when gluten is ingested, it produces an autoimmune response in the lining of the small bowel which generates specific kinds of antibodies. Some people are IGA deficient and such that the IGA antibody tests done for celiac disease will have skewed results and cannot be trusted. In that case, there are IGG tests that can be ordered though, they aren't quite as specific for celiac disease as the IGA tests. But the possibility of IGA deficiency is why a "total IGA" test should always be ordered along with the TTG-IGA. The other modality is an endoscopy (scoping of the upper GI track) with a biopsy of the small bowel lining. The aforementioned autoimmune response produces inflammation in the small bowel lining which, over time, damages the structure of the lining. The biopsy is sent to a lab and microscopically analyzed for signs of this damage. If the damage is severe enough, it can often be spotted during the scoping itself. The endoscopy/biopsy is used as confirmation when the antibody results are positive, since there is a small chance that elevated antibody test scores can be caused by things other than celiac disease, particularly when the antibody test numbers are not particularly high. If the antibody test numbers are 10x normal or higher, physicians will sometimes declare an official diagnosis of celiac disease without an endoscopy/biopsy, particularly in the U.K. Some practitioners use stool tests to detect celiac disease but this modality is not widely recognized in the medical community as valid. Both celiac testing modalities outlined above require that you have been consuming generous amounts of gluten for weeks/months ahead of time. Many people make the mistake of experimenting with the gluten free diet or even reducing their gluten intake prior to testing. By doing so, they invalidate the testing because antibodies stop being produced, disappear from the blood and the lining of the small bowel begins to heal. So, then they are stuck in no man's land, wondering if they have celiac disease or NCGS. To resume gluten consumption, i.e., to undertake a "gluten challenge" is out of the question because their reaction to gluten is so strong that it would endanger their health. The lining of the small bowel is the place where all of the nutrition in the food we consume is absorbed. This lining is made up of billions of microscopically tiny fingerlike projections that create a tremendous nutrient absorption surface area. The inflammation caused by celiac disease wears down these fingers and greatly reduces the surface area needed for nutrient absorption. Thus, people with celiac disease often develop iron deficiency anemia and a host of other vitamin and mineral deficiencies. It is likely that many more people who have issues with gluten suffer from NCGS than from celiac disease. We actually know much more about the mechanism of celiac disease than we do about NCGS but some experts believe NCGS can transition into celiac disease.
    • SamAlvi
      High TTG-IgG and Normal TTG-IgA

      By SamAlvi · Posted

      Thank you for the clarification and for taking the time to explain the terminology so clearly. I really appreciate your insight, especially the distinction between celiac disease and NCGS and how anemia can point more toward celiac. This was very helpful for me.
    • Jsingh
      Son's legs shaking

      By Jsingh · Posted

      Hi,  My 7 year daughter has complained of this in the past, which I thought were part of her glutening symptom, but more recently I have come to figure out it's part of her histamine overload symptom. This one symptom was part of her broader profile, which included irritability, extreme hunger, confusion, post-nasal drip. You might want to look up "histamine intolerance". I wish I had known of this at the time of her diagnosis, life would have been much easier.  I hope you are able to figure out. 
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      Son's legs shaking

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