Strange new sensitivity to almost every food?

[SummerAnne]

Back story I am 24 years old I am a female I was diagnosis with Celiac back in 2013 and I follow a strick gluten free diet I prepare all my meals at home. Anyway back in  late January I had pneumonia which caused some inflammation I was on antibiotics for that and for thyroid issues. Ever since then I swear I have a mild allergic reaction to nearly everything I put into my mouth, I can't eat oatmeal, apples, pineapples, grapes, honey, milk, cheese, anymore without getting super itchy hours later. Doctors think I'm imagining it but I can feel my face puff up slightly and my fingers getting these little itchy bumps, I end up taking Benadryl (the dye free kind) just to calm down the itching, my doctor said I should lay off the Benadryl but its hard since I'm not sure what I'll have a reaction too anymore. 

 

Things I can eat that don't make me break out (so far) Orange Juice and Eggs, I can tolerate deli turkey too, depending on the brand, that's it though, I've just been living off of eggs for the past month because everything else I start sneezing and itching. I tried the apples several times and I end up with itchy watery eyes sneezing and blowing my nose, same with raisins, my digestion has been terrible since I'm not able to eat properly anymore. I have an allergist she tested me for the oranges and pineapple it said I wasn't allergic but I know something is wrong. I 'm really reaching my limit since I can't get doctors to take me seriously.  I've lost about 50 pounds since January, my doctor told me try not to lose anymore weight I am 5, 8 and 119 pounds. 

[trents]

I have no bright ideas about this one. That has got to be tough to live with! At least you can eat eggs and they are the single most nutritious food on the planet.

But seriously, I would keep looking for a medical professional who will take you seriously. This might help get you started: http://toyourhealthllc.com/2018/12/23/the-mystery-of-mast-cell-activation-my-perfect-storm/

[GFinDC]

Hi Summeranne,

You might be developing DH (dermatitis herpetiformis).  DH is a skin condition only celiacs get.   It is an itchy rash that usually appears symeterically on the body.  I suggest you stop all oats and dairy for a few months to see that helps.

[cyclinglady]

When was the last time your celiac antibodies were tested?  This might be active celiac disease.  GFInDC and Trents have given you good advice.  Ditch those oats, research mast cell activation syndrome, and keep advocating for yourself.  Consider a repeat endoscopy if your antibodies are elevated.  
 

Ditch the Benedryl which crosses into the blood brain barrier.  If you need an antihistamine, choose one like Zyrtec or Clariton.  I have used those safely for years and they were recommended by my allergist, especially after a gluten exposure, the flu, a cold and a tooth infection (three courses of antibiotics) all within six weeks which caused chronic autoimmune hives and later, my third autoimmune disorder.  

[trents]

Not sure what the latest figures are but I've read that about 10% of Celiacs react to oat gluten like they do wheat/barely/rye gluten.

[MrPK]

It could be the eggs, would be tough to ask you to drop eggs since it's the only thing you say you feel well eating. It's possible they are the main culprit causing issues with the other foods though. Perhaps you could try light juice for 3 or so days, juices you can tolerate, while you drop the eggs. Then see if you're good with the other foods.

[Kate333]

Hi SummerAnne (what a cool name!)  

I can empathize.  I also have had pretty dramatic weight loss (in the last 9 months since blood tests showed "likely" celiac disease) and am having the SAME kinds of food "sensitivities"...even to foods not obviously made from gluten.  My "problem" non-gluten foods are dairy and oatmeal (even gluten-free-labeled oats).  I cannot seem to tolerate/digest these foods at all.  Also most nuts, avocados, and pineapples trigger "allergy" symptoms (tongue immediately "tingles" and nose runs). I notice other skin issues, with me "burning" inner eyelids and scalp dermatitis (which my docs say is not related to celiac disease, but I wonder). 

I have been on gluten-free diet for about 6 months.  Then retested after diet for G antibodies which showed dramatic G decline but still not near normal yet.  

IMO you are NOT "imagining things" as so many docs tell patients these days when they cannot come up with an obvious, easy "explanation".  You are right to listen to your body.  Sometimes you really have to push doctors to listen/follow up!

First, get a follow up blood test and make sure you aren't "accidentally" getting consuming G at home.  It can be hidden ingredients in so many things you would never consider, even salad dressing, condiments. Even shared microwaves/frying pans/ovens.  Also, stop dairy and oats for a few weeks to see if your other allergy symptoms fade.  If those steps don't help, insist on endoscopy or EGD camera pill to get a good look at your entire small intestine.   If that test result is normal, it indicates non-celiac disease problems (IBS/SIBO/stress/eating disorder).  IBS/SIBO can also cause chronic GI probs and weight loss similar to celiac disease. 

Speaking for myself, the stress of this big eating adjustment has definitely made me paranoid about almost everything/how much I eat, which I'm sure is a big factor in my weight loss and perhaps food reactions.  I have made appts with dietician and counselor to help me cope.  

 

 

 

 

[SummerAnne]

17 hours ago, MrPK said:

It could be the eggs, would be tough to ask you to drop eggs since it's the only thing you say you feel well eating. It's possible they are the main culprit causing issues with the other foods though. Perhaps you could try light juice for 3 or so days, juices you can tolerate, while you drop the eggs. Then see if you're good with the other foods.

Will do, I stopped eating eggs about two days ago actually, I haven't eaten solids just been drinking water and orange juice. I'm going to give it another week and see what happens. 

[SummerAnne]

11 hours ago, Kate333 said:

Hi SummerAnne (what a cool name!)  

I can empathize.  I also have had pretty dramatic weight loss (in the last 9 months since blood tests showed "likely" celiac disease) and am having the SAME kinds of food "sensitivities"...even to foods not obviously made from gluten.  My "problem" non-gluten foods are dairy and oatmeal (even gluten-free-labeled oats).  I cannot seem to tolerate/digest these foods at all.  Also most nuts, avocados, and pineapples trigger "allergy" symptoms (tongue immediately "tingles" and nose runs). I notice other skin issues, with me "burning" inner eyelids and scalp dermatitis (which my docs say is not related to celiac disease, but I wonder). 

I have been on gluten-free diet for about 6 months.  Then retested after diet for G antibodies which showed dramatic G decline but still not near normal yet.  

IMO you are NOT "imagining things" as so many docs tell patients these days when they cannot come up with an obvious, easy "explanation".  You are right to listen to your body.  Sometimes you really have to push doctors to listen/follow up!

First, get a follow up blood test and make sure you aren't "accidentally" getting consuming G at home.  It can be hidden ingredients in so many things you would never consider, even salad dressing, condiments. Even shared microwaves/frying pans/ovens.  Also, stop dairy and oats for a few weeks to see if your other allergy symptoms fade.  If those steps don't help, insist on endoscopy or EGD camera pill to get a good look at your entire small intestine.   If that test result is normal, it indicates non-celiac disease problems (IBS/SIBO/stress/eating disorder).  IBS/SIBO can also cause chronic GI probs and weight loss similar to celiac disease. 

Speaking for myself, the stress of this big eating adjustment has definitely made me paranoid about almost everything/how much I eat, which I'm sure is a big factor in my weight loss and perhaps food reactions.  I have made appts with dietician and counselor to help me cope.  

 

 

 

I don't eat dairy anymore I haven't for a few months, I drink oat milk which may be the cause, my diet is extremely limited since this happened unfortunately. I'll try to make more appointments with my doctors because this is  literally killing me at this point thanks for the reply.

 

[SummerAnne]

22 hours ago, cyclinglady said:

When was the last time your celiac antibodies were tested?  This might be active celiac disease.  GFInDC and Trents have given you good advice.  Ditch those oats, research mast cell activation syndrome, and keep advocating for yourself.  Consider a repeat endoscopy if your antibodies are elevated.  
 

Ditch the Benedryl which crosses into the blood brain barrier.  If you need an antihistamine, choose one like Zyrtec or Clariton.  I have used those safely for years and they were recommended by my allergist, especially after a gluten exposure, the flu, a cold and a tooth infection (three courses of antibiotics) all within six weeks which caused chronic autoimmune hives and later, my third autoimmune disorder.  

I never heard of a cealic antibody test before, I just had an endoscopy and they took a sample, I'll be sure to ask my GI about it though he doesn't know much about cealic, most doctors don't. I heard of Zyrtec but I read it had gluten in it? I'll try the Clartin instead. 

[MrPK]

18 minutes ago, SummerAnne said:

Will do, I stopped eating eggs about two days ago actually, I haven't eaten solids just been drinking water and orange juice. I'm going to give it another week and see what happens. 

Please update in a week, I think you will feel much better. This has happened with a friend of mine before so it caught my eye.

[cyclinglady]

1 hour ago, SummerAnne said:

I never heard of a cealic antibody test before, I just had an endoscopy and they took a sample, I'll be sure to ask my GI about it though he doesn't know much about cealic, most doctors don't. I heard of Zyrtec but I read it had gluten in it? I'll try the Clartin instead. 

Wow!  2013 was a long time ago.  It would be usual for you to be diagnosed without an antibodies blood test.  Possible, but rare.  I think you should ask for your medical records.  As a mom if a university student, I would urge you to keep all your medical records. 
 

You should be receiving follow-up celiac disease care as recommended by the celiac disease research centers and the American GI Association.  Obviously, your GI is not even using Dr. Google.  Maybe time for a new GI.  But like I said, even your PCP can do follow up care.  
 

https://www.beyondceliac.org/research-news/new-celiac-disease-guidelines-emphasize-follow-up-care/

 

Read the label for inactive ingredients, but Zyrtec is gluten free.  It might not be labeled “gluten free”, but most drugs are not.  
 

 

 

 

 

[cyclinglady]

1 hour ago, SummerAnne said:

Will do, I stopped eating eggs about two days ago actually, I haven't eaten solids just been drinking water and orange juice. I'm going to give it another week and see what happens. 

Why give up eggs?  Just drinking water and OJ is not safe!  

Nothing against Mr. PK, but he is new, does not have celiac disease or mast cell issues.  Besides checking to see if you have active celiac disease, consider an allergist or find another PCP who is willing to get to the bottom of your allergy symptoms.  
 

 

[trents]

If you GI doc doesn't know much about Celiac disease it's time to get a new one. There's no excuse in in the year 2020 for any physician not to have a good awareness of Celiac Disease, much less a GI doc. There is a much better general awareness, even in the nonmedical public, than there was 15 years ago.

[MrPK]

1 hour ago, cyclinglady said:

Why give up eggs?  Just drinking water and OJ is not safe!  

Nothing against Mr. PK, but he is new, does not have celiac disease or mast cell issues.  Besides checking to see if you have active celiac disease, consider an allergist or find another PCP who is willing to get to the bottom of your allergy symptoms.  
 

 

Hi I was diagnosed with Hypothyroid and Celiac disease by my Physician, I do not believe I have mast cell issues from what I have read of them, OP may.

 

Personally I had a watery nose, itchy nose as well as an itchy dry scalp and some mucus from the lungs/stomach as my reactions to foods. Extreme fatigue, cold hands/feet which were attributed to Thyroid. I went on water and juice(below) for a bit until I started craving foods again, then I went with those cravings(foods I enjoy eating). I was able to tolerate those foods then(below). A friend of mine had issue as OP where eggs felt like the only viable option. I came across this thread which reminded me of my friends experience so I added my input. Dropped eggs, went on juice for some time until started craving certain simple foods and started eating those foods tolerably. I always say eat only what you crave do not eat anything you do not really want to eat and eat comfortably as you can enjoy(do not overeat as it will make you adverse).

*Apple, Orange and Carrots were good I'd juice them separately, never together. Whenever I felt like drinking some juice. 

Rolled Oats(1 cup), almonds(10), flaxseed(1 tablespoon grinded), raisins(10), blueberries(10) and some light sprinkled sugar was the breakfast after the juicing.

Later on in the day I would have a glass of fortified Calcium orange juice with some pistachios...

Dinner White rice with some beans or lentils and spices.

Starting off simple can help things settle.

OP needs to simplify diet with things that she can tolerate and enjoy. She needs something to help her, I have given my input.

"pineapples, grapes, honey, milk, cheese" - were major triggers just like OP

As long as you're taking those trigger foods they can cause all types of issues that you suddenly start attributing to all foods.

OP could try the approach I took as well as my friend who had similar issue to OP. She would see the result in a week, has stated her doctor and allergist did not help. 

 

 

 

 

 

[cyclinglady]

10 minutes ago, MrPK said:

Hi I was diagnosed with Hypothyroid and Celiac disease by my Physician, I do not believe I have mast cell issues from what I have read of them, OP may.

 

Personally I had a watery nose, itchy nose as well as an itchy dry scalp and some mucus from the lungs/stomach as my reactions to foods. Extreme fatigue, cold hands/feet which were attributed to Thyroid. I went on water and juice(below) for a bit until I started craving foods again, then I went with those cravings(foods I enjoy eating). I was able to tolerate those foods then(below). A friend of mine had issue as OP where eggs felt like the only viable option. I came across this thread which reminded me of my friends experience so I added my input. Dropped eggs, went on juice for some time until started craving certain simple foods and started eating those foods tolerably. I always say eat only what you crave do not eat anything you do not really want to eat and eat comfortably as you can enjoy(do not overeat as it will make you adverse).

*Apple, Orange and Carrots were good I'd juice them separately, never together. Whenever I felt like drinking some juice. 

Rolled Oats(1 cup), almonds(10), flaxseed(1 tablespoon grinded), raisins(10), blueberries(10) and some light sprinkled sugar was the breakfast after the juicing.

Later on in the day I would have a glass of fortified Calcium orange juice with some pistachios...

Dinner White rice with some beans or lentils and spices.

Starting off simple can help things settle.

OP needs to simplify diet with things that she can tolerate and enjoy. She needs something to help her, I have given my input.

"pineapples, grapes, honey, milk, cheese" - were major triggers just like OP

As long as you're taking those trigger foods they can cause all types of issues that you suddenly start attributing to all foods.

OP could try the approach I took as well as my friend who had similar issue to OP. She would see the result in a week, has stated her doctor and allergist did not help. 

 

 

 

 

 

I am sorry, I mixed you up with someone else.     Still, I am concerned that SummerAnne, who has lost so much weight,  is living on OJ and water.  Not to mention that she has not had any celiac disease follow-up care.  

Edited July 14, 2020 by cyclinglady

[MrPK]

5 minutes ago, cyclinglady said:

I am sorry, I mixed you up with someone else.     Still, I am concerned that someone who has lost so much weight is living on OJ and water.   

No problem, Yes I am concerned for OP as well.

Simplifying the diet with things that she can tolerate and enjoy would help. Issue is her list is so small at just orange juice and eggs. 

OP needs to find a place of balance she can build upon with simple foods.

She has to keep working towards finding that place.

When my friend was solely eating eggs, she got there due to too many trigger foods, it's like one triggers and it causes a cascade.

"pineapples, grapes, honey, milk, cheese" - were all major trigger foods.

I think dropping the Eggs and working to build up with simple foods can assist OP find her balance. I only commented because it reminded me of my friends situation.

We all have immunity built up to foods, sickness and etc. can cause us to lose that immunity, it's a matter of building it back up imo.

 

[MrPK]

32 minutes ago, MrPK said:

We all have immunity built up to foods, sickness and etc. can cause us to lose that immunity, it's a matter of building it back up imo.

 

Issue is us in the Western World don't get properly taught on how to build the immunity back when we lose it so we get stuck in these circular situations as OP may be. Wish I could be more helpful to OP in her healing but I will try my best to assist her. She has to find her balance. The medical system whiffs on a lot of these situations for people. It seems she lost her immunity to some foods after her sickness and then it cascaded. I don't know about mast cells and etc. So I would never say she should not seek medical advice. I am saying it may be a simple issue that will take time and learning to conquer.

 

https://healthynibblesandbits.com/easy-kitchari-spiced-dal-rice/

 

^ Trying a simple nutritious dish like this could help the healing process. It's a process in my eyes. I'm not big on Vegan trends and all that jazz but I definitely feel it's best to start from a Vegan base as you build your immunity back, then progress to Vegetarian homemade yogurt to soothe the gut... half yogurt half water to cool intestines when needed eventually introduce some meats back into diet.

I will try my best to help you get things rolling again OP!

 

[MrPK]

11 minutes ago, MrPK said:

Issue is us in the Western World don't get properly taught on how to build the immunity back when we lose it so we get stuck in these circular situations as OP may be. Wish I could be more helpful to OP in her healing but I will try my best to assist her. She has to find her balance. The medical system whiffs on a lot of these situations for people. It seems she lost her immunity to some foods after her sickness and then it cascaded. I don't know about mast cells and etc. So I would never say she should not seek medical advice. I am saying it may be a simple issue that will take time and learning to conquer.

The way a baby steadily has foods introduced into its' diet to build up immunity you have to take the same approach. It all adds up to building that immunity back. You were fine before the sickness from what I have read. After every sickness the approach should be the same. Simple foods and build. If you just keep eating everything you normally would it can throw stuff off and complications can arise, you can restart the process and heal though. I am here to help as I can 👍

[Kate333]

SummerAnne, I join the others in expressing my deep concern that your only diet appears to be OJ and water (and earlier "only eggs").  I don't know how long you have been on this so-called "diet" but it would certainly explain your drastic weight loss and perhaps also your other symptoms (food intolerance "triggers").  It sounds like you are dangerously starving yourself, depleting your body of essential vitamins and minerals, in the hopes of finding the "right diet" to "clear up" some skin issues.  Starvation will NOT address that; it will only cause your organs to go into shock, shut down, and endanger your life.  Your body is just responding by ringing warning bells.  Please heed them.  And please do not be offended or reluctant to consult with a MH therapist.  No shame in doing that and so many physical issues ARE OFTEN linked to emotional ones.  IMO, it is VERY easy to fall into a trap of anxiety-induced eating disorders (whether related to Celiac, IBS, or other issues).

If your doctor tells you again, "Try not to lose anymore weight," I suggest you respond by emphasizing that you cannot do that alone, you need help, and insist on a referral to a dietician, Gastro, and/or MH specialist.  Sometimes you really have to "spell it out," wave a big red flag, to get a distracted, inattentive, overworked doctor's attention.  If that doesn't work, as others have said, find a DIFFERENT doctor.  Your health/life depend on it!     

[Matt McFaul]

On 7/12/2020 at 8:53 PM, SummerAnne said:

" January I had pneumonia which caused some inflammation I was on antibiotics for that and for thyroid issues."

Wow, that's pretty specific, and very similar to what happened to me.  I was in the hospital for suspected Covid back in April, then again a few more times since.  However, it was actually a medication issue.  It would appear that they misdiagnosed me as hypothyroid, when my TSH levels were well within normal range.  They gave me a drug called Levothyroxine, which gave me every single severe side effect listed on rxlist.com.  I lost my taste and everything.  Since taking that thyroid drug, I have had many foods that cause a burning sensation in my mouth.  Were you on the same medication?  I was also on Doxycycline (antibiotic).  In my case there is always the chance that there were interactions, because the doctors did not inform me that you are not suppose to take that thyroid med with vitamin D or Iron, yet they prescribed me with both.  I actually just learned about this Gluten problem myself, though looking back I can see that it has been causing me problems for years.