Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.


  • Celiac.com Sponsor (A1):
    Celiac.com Sponsor (A1-M):
  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Milk.


Bell

Recommended Posts

Bell Apprentice

I've been off gluten for about 2 months, and feel much better for it. D has stopped, and my mind feels clearer, which i'm sure you'll understand, is an enormous relief! The only thing is, now I think I'm allergic to milk. Or intolerant perhaps. When I drink milk I feel within about 30 mins or so that I need to clear my throat. Every 2 minutes or so. It's not painful, but a big old pain nonetheless. The thing is, before going gluten-free this never happened as a response to drinking milk. I've experimented a bit, by changing to soy milk - it stopped the mucus immediately, but when I eat a bit of cheese it does not really come back. I'm a bit green about how this works, but my impression was that lactose tends to be the allergen that makes you mucosy. I then read lots of anti-soy literature saying it would cause tumours and was generally bad for you, and tried to find a middle ground by using goats milk instead. But exactly the same thing happened. I'm clearing my throat constantly after a small cup of tea earlier today!

I can't research much because my internet connection is "wireless" and stops working, or slows right down when I move toward the computer (I'm not joking! it works for my boyfriend!) so could anyone help me? Is it normal to be come intolerant of something else after eliminating gluten?

bell


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



ShayFL Enthusiast

Yes....many of us have experienced the same thing. The theory is that the gluten intolerance "mask" others. And once that main irritant is removed, the others come to light. It can be a bit frustrating.....but listen to your body. Stop drinking the milk. Milk is hard to digest in general (even for healthy folks). Fermented dairy is a better choice (cheese, kefir and yogurt). You said the cheese doenst bother you. So here is your clue that what I am saying is correct.

For "milk" I use coconut milk or almond milk. I also enjoy Hemp milk. The hemp has the good fats we need.

The reality is that you dont need SOY or DAIRY to be very healthy. Dairy is a myth. The countries that consume the most dairy have the most osteoperosis. Go figure. The countries that consume the most vegetables and sea vegetables have very little osteoperosis. Those same veggie countries eat soy but ONLY fermented (natto, tempeh, miso, etc.). The U.S. invented soy milk. It isnt natural and it is not a health food IMO.

Bell Apprentice

I know it sounds daft, but I'm still surprised, and comforted by the fact that my experiences are so familiar to the folks here. I still feel embarrassed to be "picky" when I'm out with my friends, but here i know it's understood. I will find it hard I think to find a replacement for milk, but actually I would like to give up cheese too for the time being. I always thought that lactose caused the mucus, and the lactose was far less in goats milk and cheese too. But I expected if anything to be instead be sensitive to the casein since that is similar in structure to gluten. I'm not sure what the symptoms of casein intolerance are.

What else is a good substitute for milk? I like soy, but have read too much bad press. Almond milk is lovely but too weak and expensive. I love full fat milky tea! perhaps I should invest in a nut milk making machine, because I can't afford almond milk in the quantities I'd drink it! And cheese - how on earth can I replace that? My diet is rapidly shrinking. Luckily, drinking milk and coughing and swallowing my own mucus makes me less inclined to eat anything at all, which is a relief.

X

Yes....many of us have experienced the same thing. The theory is that the gluten intolerance "mask" others. And once that main irritant is removed, the others come to light. It can be a bit frustrating.....but listen to your body. Stop drinking the milk. Milk is hard to digest in general (even for healthy folks). Fermented dairy is a better choice (cheese, kefir and yogurt). You said the cheese doenst bother you. So here is your clue that what I am saying is correct.

For "milk" I use coconut milk or almond milk. I also enjoy Hemp milk. The hemp has the good fats we need.

The reality is that you dont need SOY or DAIRY to be very healthy. Dairy is a myth. The countries that consume the most dairy have the most osteoperosis. Go figure. The countries that consume the most vegetables and sea vegetables have very little osteoperosis. Those same veggie countries eat soy but ONLY fermented (natto, tempeh, miso, etc.). The U.S. invented soy milk. It isnt natural and it is not a health food IMO.

AliB Enthusiast

Soy milk is VERY mucous-forming. I can't tolerate soy at all.

It is very common for other intolerances to become apparent. It may be a mask effect, but it may also be, as I suspect, down to rogue bacteria adapting from their original food source - gluten-based carbs - to other sugars/carbohydrates.

Lactose is a milk sugar.

It depends on the type of cheese as to whether you can tolerate it or not. Certain cheeses that have been cultured using lactic bacteria that digest the lactose are usually ok, like Brick, Cheddar, dry curd cheese, Gruyere, Havarti, Manchego, Monterey Jack, Provolone, Swiss, can usually be tolerated ok and some like blue cheeses, Danish and Stilton, Brie and Camembert, Edam, Gouda, Gorgonzola, Gruyere, Muenster, Parmesan, Port du Salut, Romano and Roquefort may be able to be tolerated occasionally. It is probably a matter of experimentation.

Milk is best avoided unless you can find a source of raw unpasteurised and are prepared to drink it, as pasteurisation kills the very enzymes in the milk that are there to help us digest it. Homogenisation also changes the fat structure in the milk, rendering it into a form that may be damaging to the body (not enough is known about what it does). They break the fat down so it will stay mixed into the milk but its effect is unknown.

I also use coconut milk and now actually prefer it to cows milk.

I had to avoid dairy too after going gluten-free and also most carbs as I can't digest them properly either which is also very common. I was actually Lactose intolerant for years - constantly clearing my throat - other foods can do that but dairy was the worst, and if I ate a dessert with gluten, cream and sugar, I would be coughing for hours. Like Shay and others I have been following the Specific Carbohydrate Diet and am gradually healing and recovering.

Bell Apprentice

I don't find soy milk to be mucous forming for me at all, but I am quite dubious about its supposed health benefits. I think I'd rather try and give up milk completely than drink as much soy as I would habitually have in my tea every day.

Coconut milk - isn't that really thick and creamy? lovely too, but surely you can't put it in hot drinks?

I am very interested in the specific carbohydrate diet, as I have noticed that although my stomach isn't upset, I feel more anxious and forgetful when I have rice and corn. But if I remember rightly, the SCD allows milk. I was worried about what to eliminate and what to keep. It seems everything is troublesome unless I try to ignore some of the more "mental" symptoms!

ShayFL Enthusiast

SCD only allows 24 hour fermented homemade yogurt. And can sub goat milk or coconut milk to make the yogurt if you dont tolerate Cow. A few cheeses to that have no lactose or casein.

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - knitty kitty replied to HectorConvector's topic in Related Issues & Disorders
      327

      Terrible Neurological Symptoms

    2. - cristiana replied to EssexMum's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Concerning GP advice

    3. - EssexMum posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Concerning GP advice

    4. - Florence Lillian replied to Florence Lillian's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      5

      Gluten-Mimicking Proteins that can affect some Celiac individuals.

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,632
    • Most Online (within 30 mins)
      7,748

    Kit Sunshine
    Newest Member
    Kit Sunshine
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • Scott Adams
      Here are some articles on cross-reactivity and celiac disease:      
    • knitty kitty
      @HectorConvector, Here are some articles about "dry Beriberi" and neuropathy.  I hope you've been able to acquire thiamine hydrochloride or Benfotiamine.  I'm concerned.   Dry Beriberi Due to Thiamine Deficiency Associated with Peripheral Neuropathy and Wernicke's Encephalopathy Mimicking Guillain-Barré syndrome: A Case Report and Review of the Literature https://pubmed.ncbi.nlm.nih.gov/30862772/ Dry Beriberi Manifesting as Acute Inflammatory Demyelinating Polyneuropathy in a Patient With Decompensated Alcohol-Induced Cirrhosis https://pmc.ncbi.nlm.nih.gov/articles/PMC7707918/ A Rare Case of Thiamine Deficiency Leading to Dry Beriberi, Peripheral Neuropathy, and Torsades De Pointes https://pmc.ncbi.nlm.nih.gov/articles/PMC10723625/
    • cristiana
      Good evening @EssexMum You are quite right to be concerned about this situation.  Once diagnosed as coeliac, always a coeliac, and the way to heal  is through adopting and sticking to a strict gluten diet. That said... I have travelled twice to France since my diagnosis, firstly in May 2013 and again in August 2019.   My spoken French isn't bad, and whilst there I tried my best to explain my needs to chefs and catering staff, and I read labels very carefully when shopping in supermarkets, but both times I came away with worsening gastric symptoms and pain. Interestingly,  after the second holiday, my annual coeliac review took place the following month and although I'd been very careful to avoid gluten all year, thanks to that August holiday my coeliac antibodies were elevated,  Clearly I hadn't been imagining these symptoms and they must have been caused by gluten sneaking in somehow. When I spoke to my gastroenterologist on my return, who is an excellent doctor, he told me with a smile that this was a very common experience in France among his patients, and not to worry too much about it! In fact, before we went away in May 2013, which was just after I had been formally diagnosed, he told me not to even bother trying to adopt a gluten free diet until I returned, knowing what France was like, but I was feeling so awful at that time I ignored his advice and at least tried to make a start with it. (I ought to say - both these visits were some time ago, so perhaps things are a lot better there now.) So what to do?  I would say at least try to explain to catering staff the situation - they should be able to rustle up a plate of cheese, boiled eggs, tuna, salad and fruit, and if things like crackers and gluten-free pot noodle or oats can be packed in the UK, those can be produced at mealtimes.    Of course, most larger supermarkets in France do now cater for coeliacs, but when I was last there the the choice wasn't as wide a range as we have in the UK but I think that is partly because the French like to cook from scratch, whereas our gluten-free aisles have quite a lot of dried or pre-baked goods in them/convenience foods, because I think we as a nation tend to use them more. I would be worth doing a bit of research on the internet before the trip, - the words you want are 'sans gluten'.  I've just googled 'sans gluten Disney Paris" and this came up.  I do hope at least some of this is of help. https://www.tripadvisor.co.uk/Restaurants-g2079053-zfz10992-Disneyland_Paris_Ile_de_France.html  Whatever befalls in France, at least your stepdaughter can resume her usual diet on her return. On a related tack, would you be happy to post any positive findings/tips upon her return - it might be of use to others travelling to Disneyland Paris with children in future? Cristiana
    • EssexMum
      Hi, I am after some advice re my step daughter and her Coeliac Disease. She is 9 years old and had a very limited diet before being diagnosed (very fussy and very lenient parents), since being diagnosed it has become hard to find places out that will cater for her, but we manage.  History: She had been having severe tummy pains on and off every few months so had a bunch of tests and eventually was diagnosed with celiac disease a number of months ago. We was told that she is at a very high level and should avoid gluten for the rest of her lift, we was told that the gluten she has been eating has damaged the 'fingers' inside her and they will not replenish. We was informed that her body absorbs the gluten rather then rejecting it and that is why she doesnt react to the gluten straight away, it will be a build up and then the pains start. We was advised that by her not reacting straight away, it did not mean it wasnt harming her inside. We was given literature about buying a separate toaster and cutting board etc to avoid cross contamination and have been checking all food labels etc.  Problem: the issue is the novelty seems to have worn off with her Mum and we are now posed with a situation. They are going on holiday to Disneyland Paris for 3 nights and she phoned the hotel who said they cannot cater for gluten free. She phoned the GP and had a conversation and then told my partner that the GP had said it was fine for her to have gluten for the 3-4 days. He questioned it and she said no its fine, she hasnt had it for months so a few days wont hurt and she exposed to it anyway without knowing so it will be fine and shes not ruining her holiday etc.   My partner could see from the online notes that his ex wife had told the doctor that the child does not follow a strict gluten-free diet anyway - not true. At least not with us! My partner requested a call with the same doctor who told him that it is the mums discretion and that the child should be monitored for reactions - he explained that the issue is she doesnt react straight away. The GP said no its all mums discretion and she knows best. We are going to try to speak to the consultant at the hospital, but I just wanted to gauge some thoughts. It just seems bizarre to me that we can go from being told to avoid gluten for the rest of her life and how harmful it is to her body, to now it being ok for her to have it for a few days. Thanks in advance  
    • Florence Lillian
      Hi Scott: A wonderful, thoughtful explanation. Controlled human studies would be very interesting and quite informative. I have been eliminating certain foods and have narrowed it down considerably. Having other autoimmune diseases along with Celiac has become rather challenging. I appreciate your input, thank you. All the best, Florence
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.