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Dairy sensitivity and celiac disease?

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Hello all! 

I am new to the forum and am dealing with a possible diagnosis of celiac disease. 

I was just wondering, does anyone else here have extreme reactions to dairy as well as gluten? I've heard that dairy sometimes triggers inflammation in newly diagnosed celiac patients, but what sort of symptoms are normally experienced? 

Whenever I have even the most trace amounts of dairy, I immediately feel exhausted, as well as developing eczema and minor swelling on my face. I also have extreme migraines for four to five days after exposure. 

I developed this sensitivity a little after my family and went off gluten. Does this seem to correlate to the disease, and have any of you exhibited simptoms like this?? 

I am feeling really confused right now! 

Claire 

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Hi Claire and welcome :)

It's quite common for celiacs to also suffer from lactose intolerance.

https://www.coeliac.org.uk/coeliac-disease/associated-conditions-and-complications/lactose-intolerance/

Quote

Lactose is broken down by an enzyme called lactase, which is found in the lining of the gut. When people are first diagnosed with coeliac disease, the lining of the gut still has the damage caused by eating gluten which can mean that the body does not make enough lactase, the enzyme that is made does not work properly or people may not be able to digest lactose. This can cause uncomfortable gut symptoms which are often similar to the symptoms of coeliac disease.

Once you are following a gluten-free diet, the gut is able to heal and you will be able to digest lactose again.

Therefore, lactose intolerance is usually temporary. Following a gluten-free diet means that most people with coeliac disease do not develop lactose intolerance.

After healing on the gluten free diet many can reintroduce lactose at a later date once the villi have recovered and begin to produce lactase once again. 

Note that you need to be consuming gluten to get an accurate diagnosis, so if you're still in the diagnostic process please let your doctor know you've cut it out as that could affect any testing!

Best of luck

 

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For testing you have to be eating gluten, not much just a cracker or a half slice a bread a day, you need to be eating it for 12 weeks for the blood test and at least 2 weeks for the endoscope and biopsies.  Remember to ask for a FULL Celiac blood test!

I have been lactose intolerant for over 15 years myself, and allergic to whey, casein is fine it seems (present in some diary free cheeses that do not bother me). Celiac is a autoimmune disease and effects everyone differently some of us develop issues with other food and allergens. Some of these go away as we heal others are life long and you just get used to it. Anyway plenty of dairy free options now days (I myself recently mastered making a few cheese alternatives.).

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Unfortunately I was off gluten for six weeks before we got the celiac blood test. It came back negative but I don't want to go back in gluten again to confirm the diagnosis. 

So have any of you had similar symptoms as the ones I listed above? I've seen that many celiacs have dairy allergies, but I wasn't sure if any of them took this form, or if it was mainly stomach aches. 

 

 

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Lactose intolerance is related to celiac because the villi (that are destroyed in celiac) make the enzyme Lactase that breaks down lactose. Most people with lactose intolerance have stomach cramps, gas, diarrhea after eating dairy/lactose. You said you have lip swelling and eczema which sounds like a true allergy. I'm not sure if food allergies are related to celiac. Have you seen an allergist?

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Celiacs, when diagnosed, have typically sustained substantial intestinal damage.  Not only are the villi damaged, causing malabsorption, but the whole immune system is compromised.  Science has shown that a majority of the immune system resides in the gut.  If you get a chance watch this video.  The speaker is a leading celiac researcher:

So, celiacs often have various food intolerances and allergies (I am one of them).  Often allergies or intolerance resolve with healing.  I get swelling, hives, eczema, rashes, itching, from many environmental things.  

I hope this helps!  

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Well as mentioned it is a autoimmune disease that effects the immune system, top it off with how it damages your your intestines....allergies, and food intolerance go hand and hand with celaic disease. And yours sounds like a allergy, need to get that tested but it is probably to one of the proteins or sugars that make up dairy. I developed really bad corn allergy so you got off lucky there lol.

 

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I'm replying to this thread a little late, but I was diagnosed with Celiacs in February earlier this year.  In January, I was nauseous all the time and had no appetite, and then I started having constant gas.  At first I thought it was stress (I get nauseous and lose my appetite when I'm stressed) since it was the busy time of year at work, but the gas flagged me that something  was wrong.  I would drink water and immediately burp and pass gas.  That's when I went to a GI and got the blood test done and the antibodies for Celiacs were literally off the charts.  I also had an endoscopy done, the biopsies came back negative but he could see my flattened villi so he diagnosed me with Celiacs (due to the patchy nature of Celiacs in the intestines).   At first, I could eat some dairy but not other dairy.  For example, Parmesan cheese and goat cheese were a big NO, but I could eat swiss cheese and SOME gouda cheeses and mozzarella cheese and yogurt, and some butter (not butter in every situation though).  Then a month ago (10 months after my diagnosis) I started getting sick eating any and all dairy.  At the same time I pinpointed this, I was also feeling nauseous every day and every time I ate ANYTHING even if it did not contain dairy, which is how I felt earlier this year before I went to the doctor and was diagnosed with Celiacs. 

It's frustrating because my symptoms aren't your typical "lactose intolerance" symptoms of gas, bloating, diarrhea, etc.  A few minutes after eating dairy my temperature starts to go up, my eyes start to burn, I get a headache, sometimes I sneeze, sometimes my ears hurt, sometimes my abdomen feels hot, my stomach aches (actual stomach, not my abdomen/ intestines), and in general I feel ill.  This lasts for several hours after eating dairy before it calms down.  I went last week to get a scratch test and it came back negative for a dairy allergy.  The allergist said sometimes people can feel flushed when they have food intolerances, so I'm guessing that even though it feels like I'm having an allergic reaction that it's really just an intolerance.  Before Celiacs I was able to eat/drink dairy just fine, I did have some slight issues with heavier creams (your typical abdominal discomfort and gas) but I could drink milk and eat cheese all day long.  I must be really sensitive because I just ate some caramel popcorn from a small shop that has gluten and dairy free options, I only had a couple handfuls but I feel sick.  I'm guessing it was probably cross-contamination - they have dairy and gluten popcorn options as well. 

So in answer to your question, yeah I get extreme reactions to dairy as well.  Searching online is frustrating because all I find is lactose intolerance information and I'm not quite sure that this is a lactose issue.  I've been meaning to get lactase pills and see if they help at all.  I hope that since you've posted this that you've been able to figure things out!

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1 hour ago, Grlybrainiac said:

I'm replying to this thread a little late, but I was diagnosed with Celiacs in February earlier this year.  In January, I was nauseous all the time and had no appetite, and then I started having constant gas.  At first I thought it was stress (I get nauseous and lose my appetite when I'm stressed) since it was the busy time of year at work, but the gas flagged me that something  was wrong.  I would drink water and immediately burp and pass gas.  That's when I went to a GI and got the blood test done and the antibodies for Celiacs were literally off the charts.  I also had an endoscopy done, the biopsies came back negative but he could see my flattened villi so he diagnosed me with Celiacs (due to the patchy nature of Celiacs in the intestines).   At first, I could eat some dairy but not other dairy.  For example, Parmesan cheese and goat cheese were a big NO, but I could eat swiss cheese and SOME gouda cheeses and mozzarella cheese and yogurt, and some butter (not butter in every situation though).  Then a month ago (10 months after my diagnosis) I started getting sick eating any and all dairy.  At the same time I pinpointed this, I was also feeling nauseous every day and every time I ate ANYTHING even if it did not contain dairy, which is how I felt earlier this year before I went to the doctor and was diagnosed with Celiacs. 

It's frustrating because my symptoms aren't your typical "lactose intolerance" symptoms of gas, bloating, diarrhea, etc.  A few minutes after eating dairy my temperature starts to go up, my eyes start to burn, I get a headache, sometimes I sneeze, sometimes my ears hurt, sometimes my abdomen feels hot, my stomach aches (actual stomach, not my abdomen/ intestines), and in general I feel ill.  This lasts for several hours after eating dairy before it calms down.  I went last week to get a scratch test and it came back negative for a dairy allergy.  The allergist said sometimes people can feel flushed when they have food intolerances, so I'm guessing that even though it feels like I'm having an allergic reaction that it's really just an intolerance.  Before Celiacs I was able to eat/drink dairy just fine, I did have some slight issues with heavier creams (your typical abdominal discomfort and gas) but I could drink milk and eat cheese all day long.  I must be really sensitive because I just ate some caramel popcorn from a small shop that has gluten and dairy free options, I only had a couple handfuls but I feel sick.  I'm guessing it was probably cross-contamination - they have dairy and gluten popcorn options as well. 

So in answer to your question, yeah I get extreme reactions to dairy as well.  Searching online is frustrating because all I find is lactose intolerance information and I'm not quite sure that this is a lactose issue.  I've been meaning to get lactase pills and see if they help at all.  I hope that since you've posted this that you've been able to figure things out!

Welcome to the forum!

It is possible to have both a lactose intolerance and issues with Casein and Whey (milk proteins).  Symptoms can vary with both.  

To help you figure it out, it would be best to have some follow-up celiac antibodies testing.  At least rule out celiac disease as the culprit.     If your celiac disease is actively flaring, this could impact your ability to digest dairy.  All celiac centers recommend follow-up testing:

http://www.cureceliacdisease.org/faq/how-often-should-follow-up-testing-occur/

Personally, I become lactose intolerant if I get glutened.  I tested positive to milk allergies (like my sibling) when I was young.  I think that the milk allergy has resolved as I have healed from celiac disease too or just aged.  

It sounds like you GI was celiac-savvy.  Intestinal villi damage can be patchy.  The pathologist May have mis-handled the biopsies (they way they were cut).  That has happened plenty of times.  

If your celiac disease is still active, look hidden sources of gluten or cross contamination.  Try to stick with non-processed foods until you feel better.  

Take care!  

Edited by cyclinglady

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On 12/18/2017 at 11:19 AM, Grlybrainiac said:

I'm replying to this thread a little late, but I was diagnosed with Celiacs in February earlier this year.  In January, I was nauseous all the time and had no appetite, and then I started having constant gas.  At first I thought it was stress (I get nauseous and lose my appetite when I'm stressed) since it was the busy time of year at work, but the gas flagged me that something  was wrong.  I would drink water and immediately burp and pass gas.  That's when I went to a GI and got the blood test done and the antibodies for Celiacs were literally off the charts.  I also had an endoscopy done, the biopsies came back negative but he could see my flattened villi so he diagnosed me with Celiacs (due to the patchy nature of Celiacs in the intestines).   At first, I could eat some dairy but not other dairy.  For example, Parmesan cheese and goat cheese were a big NO, but I could eat swiss cheese and SOME gouda cheeses and mozzarella cheese and yogurt, and some butter (not butter in every situation though).  Then a month ago (10 months after my diagnosis) I started getting sick eating any and all dairy.  At the same time I pinpointed this, I was also feeling nauseous every day and every time I ate ANYTHING even if it did not contain dairy, which is how I felt earlier this year before I went to the doctor and was diagnosed with Celiacs. 

It's frustrating because my symptoms aren't your typical "lactose intolerance" symptoms of gas, bloating, diarrhea, etc.  A few minutes after eating dairy my temperature starts to go up, my eyes start to burn, I get a headache, sometimes I sneeze, sometimes my ears hurt, sometimes my abdomen feels hot, my stomach aches (actual stomach, not my abdomen/ intestines), and in general I feel ill.  This lasts for several hours after eating dairy before it calms down.  I went last week to get a scratch test and it came back negative for a dairy allergy.  The allergist said sometimes people can feel flushed when they have food intolerances, so I'm guessing that even though it feels like I'm having an allergic reaction that it's really just an intolerance.  Before Celiacs I was able to eat/drink dairy just fine, I did have some slight issues with heavier creams (your typical abdominal discomfort and gas) but I could drink milk and eat cheese all day long.  I must be really sensitive because I just ate some caramel popcorn from a small shop that has gluten and dairy free options, I only had a couple handfuls but I feel sick.  I'm guessing it was probably cross-contamination - they have dairy and gluten popcorn options as well. 

So in answer to your question, yeah I get extreme reactions to dairy as well.  Searching online is frustrating because all I find is lactose intolerance information and I'm not quite sure that this is a lactose issue.  I've been meaning to get lactase pills and see if they help at all.  I hope that since you've posted this that you've been able to figure things out!

Hello,

The symptoms you described after ingesting dairy are similar to iodine allergy symptoms.  

https://www.livestrong.com/article/448272-are-iodine-drops-dangerous/

I have an iodine allergy and dairy allergy.  I used to could eat certain kinds of dairy, but can't tolerate any at all now.  Different kinds of dairy products have different amounts of iodine in them and the iodine in the milk used to make those products can vary, too.  

https://www.livestrong.com/article/29195-list-iodine-content-found-dairy/

https://www.dietitians.ca/Your-Health/Nutrition-A-Z/Minerals/Food-Sources-of-Iodine.aspx

I have to avoid seafood, too.  

Perhaps an iodine allergy test would be advisable.  An iodine allergy can cause a severe reaction leading to anaphylaxis.  I had a severe reaction to iodide contrast dye during a CT scan.  

Hope this helps.  

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On 12/18/2017 at 1:40 PM, cyclinglady said:

Welcome to the forum!

It is possible to have both a lactose intolerance and issues with Casein and Whey (milk proteins).  Symptoms can vary with both.  

To help you figure it out, it would be best to have some follow-up celiac antibodies testing.  At least rule out celiac disease as the culprit.     If your celiac disease is actively flaring, this could impact your ability to digest dairy.  All celiac centers recommend follow-up testing:

http://www.cureceliacdisease.org/faq/how-often-should-follow-up-testing-occur/

Personally, I become lactose intolerant if I get glutened.  I tested positive to milk allergies (like my sibling) when I was young.  I think that the milk allergy has resolved as I have healed from celiac disease too or just aged.  

It sounds like you GI was celiac-savvy.  Intestinal villi damage can be patchy.  The pathologist May have mis-handled the biopsies (they way they were cut).  That has happened plenty of times.  

If your celiac disease is still active, look hidden sources of gluten or cross contamination.  Try to stick with non-processed foods until you feel better.  

Take care!  

Thank you!

You're right, I need to schedule a follow-up testing.  My GI doctor was kind of weird and not very helpful at all (he also thought there was lactose in almond milk, to his credit he was brave enough to google it in front of me), he never said anything about follow-up testing so I figured that a year after I had been diagnosed would be sufficient.  I'll schedule one as soon as possible since I'm at about the 11 month mark of being tested.  I keep having the "allergy" reactions to things that are normally fine, like just within these past few days coffee has made my mouth tingle and then I get the slight temperature raising and the ill feeling along with slight gas and abdominal discomfort (no dairy in it obviously).  I even had a coffee ice cream (cashew milk) and it had the same reaction.  It's not the cashews either because I had had cashew milk the night before and I was completely fine.

That's so interesting that your lactose intolerance is so directly coordinated with being glutened!  Can you have any dairy just fine as long as you haven't been having gluten? 

The GI was SLIGHTLY celiac-savvy, he mentioned that the results didn't always grab from a spot that had the celiacs in it, it was from my sister's boyfriend's brother who is in medical school that told me the intestines have different sections coded with different DNA and that some people might have the celiacs in more sections than others.  At least the GI knew enough to be able to diagnose me with it even though the biopsy came back negative, I didn't know that even the way they're cut could affect it too - that's very interesting.

Okay I'll get tested and try to stay away from processed foods for now, hopefully I can schedule a test to see what my antibody levels are. As anal as I try to be, every now and then I realize I ate something with gluten in it.  It's so frustrating...

Thank you so much for taking the time to respond, the information you shared is very helpful.

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On 12/20/2017 at 1:24 AM, knitty kitty said:

Hello,

The symptoms you described after ingesting dairy are similar to iodine allergy symptoms.  

https://www.livestrong.com/article/448272-are-iodine-drops-dangerous/

I have an iodine allergy and dairy allergy.  I used to could eat certain kinds of dairy, but can't tolerate any at all now.  Different kinds of dairy products have different amounts of iodine in them and the iodine in the milk used to make those products can vary, too.  

https://www.livestrong.com/article/29195-list-iodine-content-found-dairy/

https://www.dietitians.ca/Your-Health/Nutrition-A-Z/Minerals/Food-Sources-of-Iodine.aspx

I have to avoid seafood, too.  

Perhaps an iodine allergy test would be advisable.  An iodine allergy can cause a severe reaction leading to anaphylaxis.  I had a severe reaction to iodide contrast dye during a CT scan.  

Hope this helps.  

That is very interesting, I didn't even think about iodine...I'll see if I can schedule an appointment with my allergist, or see if my GI can test me for it when I go for my antibodies testing.

That sounds awful, I'm sorry that happened to you - especially during a CT scan. 

Thank you!  This is helpful, I never even thought about iodine...

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    3. Lundgren K, Helm-Estabrooks N, Klein R. Stuttering Following Acquired Brain Damage: A Review of the Literature. J Neurolinguistics. 2010 Sep 1;23(5):447-454.
    4. Jäncke L, Hänggi J, Steinmetz H. Morphological brain differences between adult stutterers and non-stutterers. BMC Neurol. 2004 Dec 10;4(1):23.
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    Jefferson Adams
    Celiac.com 06/14/2018 - Refractory celiac disease type II (RCDII) is a rare complication of celiac disease that has high death rates. To diagnose RCDII, doctors identify a clonal population of phenotypically aberrant intraepithelial lymphocytes (IELs). 
    However, researchers really don’t have much data regarding the frequency and significance of clonal T cell receptor (TCR) gene rearrangements (TCR-GRs) in small bowel (SB) biopsies of patients without RCDII. Such data could provide useful comparison information for patients with RCDII, among other things.
    To that end, a research team recently set out to try to get some information about the frequency and importance of clonal T cell receptor (TCR) gene rearrangements (TCR-GRs) in small bowel (SB) biopsies of patients without RCDII. The research team included Shafinaz Hussein, Tatyana Gindin, Stephen M Lagana, Carolina Arguelles-Grande, Suneeta Krishnareddy, Bachir Alobeid, Suzanne K Lewis, Mahesh M Mansukhani, Peter H R Green, and Govind Bhagat.
    They are variously affiliated with the Department of Pathology and Cell Biology, and the Department of Medicine at the Celiac Disease Center, New York Presbyterian Hospital/Columbia University Medical Center, New York, USA. Their team analyzed results of TCR-GR analyses performed on SB biopsies at our institution over a 3-year period, which were obtained from eight active celiac disease, 172 celiac disease on gluten-free diet, 33 RCDI, and three RCDII patients and 14 patients without celiac disease. 
    Clonal TCR-GRs are not infrequent in cases lacking features of RCDII, while PCPs are frequent in all disease phases. TCR-GR results should be assessed in conjunction with immunophenotypic, histological and clinical findings for appropriate diagnosis and classification of RCD.
    The team divided the TCR-GR patterns into clonal, polyclonal and prominent clonal peaks (PCPs), and correlated these patterns with clinical and pathological features. In all, they detected clonal TCR-GR products in biopsies from 67% of patients with RCDII, 17% of patients with RCDI and 6% of patients with gluten-free diet. They found PCPs in all disease phases, but saw no significant difference in the TCR-GR patterns between the non-RCDII disease categories (p=0.39). 
    They also noted a higher frequency of surface CD3(−) IELs in cases with clonal TCR-GR, but the PCP pattern showed no associations with any clinical or pathological feature. 
    Repeat biopsy showed that the clonal or PCP pattern persisted for up to 2 years with no evidence of RCDII. The study indicates that better understanding of clonal T cell receptor gene rearrangements may help researchers improve refractory celiac diagnosis. 
    Source:
    Journal of Clinical Pathologyhttp://dx.doi.org/10.1136/jclinpath-2018-205023