Questionable Diagnosis

[JacDevo]

I was diagnosed with Celiac Disease in May 2016 and have been following a strict diet since then. Some of the symptoms have been relieved with following the diet. For instance, I have gained 8 lbs back (out of the 25 lbs that I lost) and my stomach symptoms have become less severe. 

However, I still have nausea on a daily basis and I still have episodes of an irritable bowel 2 or so days out of the week. I have gone to the doctor and got an EGD as well as multiple breath tests for a possible food intolerance. They haven't found any other problems in my stomach and are trying to label my persistent stomach issues as IBS. In addition to this, I have terrible migraines once or twice a week that the doctor has left unexplained.

I am concerned about this because I can sometimes pinpoint certain (gluten-free) foods that trigger the severe nausea I experience every day. For example, I get very nauseated after I eat my (former) daily breakfast of greek yogurt with honey. I also noticed an extreme feeling of sickness when I ate some baked kale chips I bought from the grocery store. It is obvious that these foods are causing me to be ill, but I cannot find a connection between them and Celiac.

 

Does this sound familiar or common to any experiences anyone has come across? I don't feel confident in my doctor's diagnoses of IBS and want to know why I still feel sick after being gluten free for so long.

[Jssmith]

2 hours ago, JacDevo said:

I was diagnosed with Celiac Disease in May 2016 and have been following a strict diet since then. Some of the symptoms have been relieved with following the diet. For instance, I have gained 8 lbs back (out of the 25 lbs that I lost) and my stomach symptoms have become less severe. 

However, I still have nausea on a daily basis and I still have episodes of an irritable bowel 2 or so days out of the week. I have gone to the doctor and got an EGD as well as multiple breath tests for a possible food intolerance. They haven't found any other problems in my stomach and are trying to label my persistent stomach issues as IBS. In addition to this, I have terrible migraines once or twice a week that the doctor has left unexplained.

I am concerned about this because I can sometimes pinpoint certain (gluten-free) foods that trigger the severe nausea I experience every day. For example, I get very nauseated after I eat my (former) daily breakfast of greek yogurt with honey. I also noticed an extreme feeling of sickness when I ate some baked kale chips I bought from the grocery store. It is obvious that these foods are causing me to be ill, but I cannot find a connection between them and Celiac.

 

Does this sound familiar or common to any experiences anyone has come across? I don't feel confident in my doctor's diagnoses of IBS and want to know why I still feel sick after being gluten free for so long.

I have been told that dairy should definitely be left out of diet after a celiac diagnosis. I do not know if this is forever or just until the colon has had time to heal.  If the colon has become permeable to substances other than nutrients, which it most likely has if biopsy proved celiac, then you also can develop other food sensitivities.  From what I have learned so far, after removing wheat we tend to overeat rice and other grains and we can become sensitive to those as well. Still learning so please forgive if that is not exactly correct. (Multiple physicians have said to leave off dairy at least for a while).This all can be very confusing and frustrating. Ideally, it seems we should be eating nothing processed and as we add back grains, add them one at a time and wait for response before adding another. Same would go for dairy. Hope this is helpful. All the best to you. 

[GFinDC]

Hi JacDevo,

Jssmith has it right.  You should eliminate all dairy from your diet for a few months at least.  6 months would be better.  Celiac disease damages the villi that line the small intestine.  Those villi make an enzyme that digests dairy sugar (lactose).  So people tend to lose the ability to digest lactose.  After some months and a strictly gluten-free diet, your villi may heal enough to be able to eat dairy again.  Not everyone does regain that ability, but some do.

There is a thread titled Newbie 101 stickied atop the Coping With section of the forum.  It has some getting started guidelines that may help.

Welcome to the forum both JacDevo and jssmith!

[JacDevo]

5 hours ago, Jssmith said:

I have been told that dairy should definitely be left out of diet after a celiac diagnosis. I do not know if this is forever or just until the colon has had time to heal.  If the colon has become permeable to substances other than nutrients, which it most likely has if biopsy proved celiac, then you also can develop other food sensitivities.  From what I have learned so far, after removing wheat we tend to overeat rice and other grains and we can become sensitive to those as well. Still learning so please forgive if that is not exactly correct. (Multiple physicians have said to leave off dairy at least for a while).This all can be very confusing and frustrating. Ideally, it seems we should be eating nothing processed and as we add back grains, add them one at a time and wait for response before adding another. Same would go for dairy. Hope this is helpful. All the best to you. 

Thanks for the advice! I will definitely leave out dairy from the picture for a while and see if things get better. I hadn't thought of that since I got tested for lactose intolerance and the results were negative. Maybe it is just a sensitivity!

[JacDevo]

4 hours ago, GFinDC said:

Hi JacDevo,

Jssmith has it right.  You should eliminate all dairy from your diet for a few months at least.  6 months would be better.  Celiac disease damages the villi that line the small intestine.  Those villi make an enzyme that digests dairy sugar (lactose).  So people tend to lose the ability to digest lactose.  After some months and a strictly gluten-free diet, your villi may heal enough to be able to eat dairy again.  Not everyone does regain that ability, but some do.

There is a thread titled Newbie 101 stickied atop the Coping With section of the forum.  It has some getting started guidelines that may help.

Welcome to the forum both JacDevo and jssmith!

Thank you for responding! Like I said to Jssmith, I didn't think it could be anything to do with lactose since I got a negative result for the lactose intolerance test. I'm willing to try anything though.

[squirmingitch]

Maybe it's a casein intolerance.

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Check out the ingredients on the Kale chips. Is there any milk protein in them?

Do you have a problem with butter? Or is is it milk & yogurt?

Also, the Kale Chips & the yogurt may not have anything in common but you might have sensitivities to each individually.

[Awol cast iron stomach]

Squirming itch may be right casein is possible.

I struggle with this myself right now in fact. I was diagnosed IBS for 18-20 years and my endoscopy / colonoscopy following gluten challenge in October 2016 showed no signs of IBS. Since a bad cc in March 2016 I had gluten, diary, and 8 foods removed from my diet. My Dr's have difficulty diagnosing me. It's is more rule out/ rule in process.

 The processed foods are absolutely an issue particularly chemically / lab created (meaning not derived from an organic food source) they act as preservatives, binders, fillers, coloring agents etc. They are a problem for me right now. I can't do cow milk protein products right now.  I eat my husband's (diary sensitivity) sheep cheese but only once or twice a week as I  due to my perceived intolerance threshold I am working to track. My husband's family has a long line of males that at a certain age can no longer tolerate cow milk proteins. They can eat goat or sheep milk cheese but not cow. They do plant based milk. Some theories in the natural based realm is some countries with feed, vaccinations, hormones, or breeding have created a sensitivity/ intolerance in susceptible individuals.

Our son is finding he can't eat cow milk or gluten without problems arising. We are a daily food intolerance diary  in my house based on all my testing. On my journey the complete removal of gluten (not just my own prep area toaster/pans etc ) shows my son may have sensitivity too. The jury is out on my daughter.

My body is my only guide on this journey. My joints are my guide threshold since my gluten challenge destroyed my gi. My joints and muscle pain act as my intolerance / threshold guide for all non gluten foods. Good luck.

[JacDevo]

12 hours ago, squirmingitch said:

Maybe it's a casein intolerance.

Open Original Shared Link

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Check out the ingredients on the Kale chips. Is there any milk protein in them?

Do you have a problem with butter? Or is is it milk & yogurt?

Also, the Kale Chips & the yogurt may not have anything in common but you might have sensitivities to each individually.

Here are the ingredients on the kale chips: organic kale, sunflower seeds, tahini, carrots, apple cider vinegar, cane sugar, onion, sea salt, and lemon juice.

I havent pinpointed a problem with butter, although it could also be a possibility seeing as I probably eat it quite often. Ive never heard of casein intolerance and will look into it.

Thanks!

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