Not Sure What I Have

[glux]

First off, I apologize for this being lengthy and a bit jumbled.  I've struggled with the following symptoms for years and I'm just starting to possibly put the puzzle together, but I'm still not certain that I have Celiac's and I'm not sure exactly where to go from here, so any help would be great!

 

My current symptoms:

I ate Chinese food about a week ago and reacted very badly to it.  I figured it was the gluten in the soy sauce or other parts of the food. I can always tell when I'm reacting because I'm very irritable and my skin/scalp begin to itch really bad, like an itch once I scratch it, moves to a different part of my body and my stomach is bloated and I have bad gas and sometimes D, joint pain, bone pain, what feels like inflammation all over my body, fatigue and insomnia.  My hair is also very variable in its thickness and texture.  The texture of my hair seems directly related to what I'm eating and the texture changes day to day. 

 

I have had anxiety pretty much all of my life, but it had become worse the past 2-3 years.  I felt like no matter how much I tried, I couldn't control my thoughts.  Since going gluten free, my anxiety is about 75% gone (which is great). However, when I have these reactions, my anxiety comes back and I'm extremely irritable for 1-3 days, but my anxiety is usually really bad for the first few hours of the reaction, then subsides to about 50% for the next day or 2.  I've also lost 40 lbs in the past 6 months, which I've mostly attributed to not eating gluten and in-turn, avoiding foods high in carbs.

 

I am now reacting to foods that I've eaten all of my life without any issues, including:

 

Bananas, avocados, pistachios, chocolate, almonds, possibly dairy and a few others that I can't think of right now.  Basically, it seems as if my diet is very restricted as I have varying reactions with varying intensities.  Just today, I ate a piece of chicken, pear and a slice of Udi's gluten-free bread for lunch and I've been reacting to that.  The chicken was home-cooked with no gluten.  This is just one example as it seems that I can react to just about anything right now.

 

History of symptoms:

In October of last year, I began reacting to virtually everything I ate.  Reactions would include itchy skin and scalp but no visible rash or hives. Scalp would also burn and turn red/pink.

 

I began doing research online and discovered leaky gut and thought this is what I have.  I went gluten-free at this time which was around the first week of October.  Went to see a general doctor near the end of October who didn’t acknowledge leaky gut as a real diagnosis but ordered general blood work. Thinking I may have developed a food allergy, I went to an allergist who did the skin prick test and that came back negative.  I mentioned Celiac disease and he ordered a blood test for celiac that came back negative however I had been gluten-free for about 3 weeks at this point.

 

My next stop was a GI doctor because I thought they could help with the symptoms that I believed at the time were related to leaky gut.  During my visit, she noted that I was bloated and had pruritus on my scalp. She did not see a reason to do a scope.  She thought that maybe my histamine pump in my stomach was putting out too many histamines, causing my scalp to itch and turn red.  She put me on histamine blockers (Pepcid and Zyrtec) for 2 weeks.  Those didn’t help.

 

For as long as I can remember, I have had loose stool.  During the past 3-5 years, I have had what I was calling 24 hour flu bugs where I would have diarrhea and extreme fatigue and joint pain for 1-2 days.  This happened on a monthly to bi-monthly basis.  I specifically remember it happening at Thanksgiving 2 years ago, but also missed many days of work with this “24 hour bug”.  This was happening more frequently over the past 2 years. It would happen a lot after eating cereal and milk.  Before going gluten free, I would eat cereal for breakfast every day and occasionally as a snack. 

 

After being gluten-free for 4 or 5 weeks, I “challenged” myself by eating a few slices of pizza.  Within 20-30 minutes of eating the pizza, I began to have neck and back pain, then a headache, joint pain and fatigue.  I went to bed early that night as I was too tired to stay awake.  I woke up 4am with  diarrhea and felt like I had the flu for the next 3-4 days including fatigue, joint pain and sporadic diarrhea.  I was extremely irritable and moody with high anxiety.

 

Following this, I have had what I believe to be accidental gluten exposure and had similar symptoms, but not as severe as the pizza reaction.  Reactions always start 20-30 minutes after eating.

 

My sensitivity then seemed to spread to corn as we made Mexican food at home that was all gluten free, including the corn tortillas.  I reacted pretty bad from this and my symptoms lasted about 1 day.  After feeling better, I started to question whether it was actually gluten that was my problem so I ate 1 slice of bread and had the same 1 day reaction that started within 20-30 minutes of eating the slice of bread.

 

I have an appointment with a GI doctor in about 2 weeks and I have quite a few questions for her.  I would like to get an endoscopy/biopsy done, but I haven't been eating gluten for 4 months now and the thought of doing a gluten challenge for a few weeks seems unbearable at this point. 

 

I've been to 6 different doctors now regarding these symptoms and I don't feel like I'm making any real progress.  At this point, I feel like I'm just living through the symptoms and even going gluten free has helped me a lot, my reactions are still pretty bad even when I'm certain that I haven't eaten gluten.  Is this normal?  If so, how long before the reactions to everyday foods will stop?  Does it sound like I have Celiac's?  If not, any other thoughts? 

 

Thank you for reading.

 

 

[ravenwoodglass]

Welcome to the board. You could be celiac but to be tested you do have to be actively eating gluten. The tests are for antibodies and if you are not eating gluten your body will stop producing antibodies. If you want to have testing done you should go back on gluten now but do tell the GI that you have only been back on it for 2 weeks as a longer challenge may be needed for accurate testing.

[GFinDC]

Welcome Glux!

 

You are kind of in a tough spot regarding testing for celiac.  Like Ravenwood said, you'd need to do a gluten challenge for some weeks to get tested at this point.  Some people in your situation decide to do that, but others decide to just stay gluten-free for life.  New testing methods are being developed, and it may be possible to get a test in a much shorter time in the future.

 

Regarding ordinary foods making you sick.  Celiac disease is an autoimmune disease.  The  immune system reaction can continue for many weeks after the offending food is eaten.  Healing the gut can take 6 months to a 18 months.  Try imagining you have a sore throat.  If you eat rice crispies your throat hurts.  If you eat steak your throat hurts.  If you eat fluffy marshmallows on powder puff cloud pillows your throat hurts.  Now imagine the sore throat last for months and everything you eat may potentially cause pain.  That's sort of what it's like feeding an irritated and damaged gut.   It doesn't always make a big difference what you feed it, the irritation is going to cause a reaction.  Of course if you feed it gluten then things are even worse.

 

Ordinary food as you call it is not necessarily safe for celiacs.  The gluten-free diet is a medical diet for us.  That means it is not something we take lightly if we want to get better.  You will need to learn to be more careful in choosing what to eat.  Randomly eating Chinese food in a restraunt you haven't verified gluten-free is way risky.  It's a learning process to go gluten-free, and takes some time and effort to get right.  But the payoff is better health and reduced symptoms.  Hang around and ask questions and read a lot on this forum.  There are a lot of people here who are willing to help you get through this.

 

Some starting the gluten-free diet tips for the first 6 months:

Get tested before starting the gluten-free diet.
Get your vitamin/mineral levels tested also.
Don't eat in restaurants
Eat only whole foods not processed foods.
Eat only food you cook yourself, think simple foods, not gourmet meals.
Take probiotics.
Take gluten-free vitamins.
Take digestive enzymes.
Avoid dairy if it causes symptoms.
Avoid sugars and starchy foods. They can cause bloating.
Avoid alcohol.
Watch out for cross contamination.

Helpful threads:

FAQ Celiac com
https://www.celiac.com/gluten-free/forum-7/announcement-3-frequently-asked-questions-about-celiac-disease/

Newbie Info 101
https://www.celiac.com/forums/topic/91878-newbie-info-101/

[NoGlutenCooties]

Hi Glux and Welcome to the Forum!

 

I love GFinDC's sore throat analogy... it's right on the money!  If you aren't going to go back to eating gluten so that you can get tested I suggest going with simple, whole foods for awhile to clear out your system.  Things like plain chicken, yams, green beans - mild food that isn't likely to cause reactions.  If this eases your symptoms, trying adding back other food items one at a time.  This will give you a better idea of what you can tolerate and what you can't.  Keep in mind that over time you may be able to tolerate foods that you are not able to tolerate early on.

 

Also... even if you do decide to get tested and the tests come back negative that doesn't mean you don't have an issue with gluten.  The tests are not alwasy accurate, and you could also have non-Celiac-gluten-intolerance in which the tests come back negative but you get to experience all of the other symptoms and health problems if you continue to eat gluten.

 

Good luck!

[glux]

Thanks for the replies, they are very helpful.   I should have been tested for Celiac before going gluten free but didn't know that at the time.  At this point, I know I have a problem with gluten as my symptoms have improved a lot since cutting gluten out and I don't plan on ever eating gluten again, but would like to know if I have Celiac.  It seems that I read somewhere on the forum that for a biopsy to be conclusive you only have to eat gluten for 2 weeks vs 4-6 weeks for the blood test?  Also, would it make sense to have the DNA test done to see if I have the genetic markers for Celiac?  If this came back negative, would this mean that it's not possible that I have Celiac, narrowing my problem down to non-Celiac gluten intolerance?

[NoGlutenCooties]

Yes, they recommend a 2-week gluten challenge before the biopsy - it takes longer for the antibodies to build up enough to test positive in the blood.  However, keep in mind that the inflammation in the small intestine is spotty and it can be easily missed when they do the biopsy.  Especially if the doctor isn't that knowledgeable and only takes 1 or 2 of them. 

 

As far as the genetic testing, they say that if you don't have at least one of the genes then you "can't" get Celiac - but there are a few fokes on here who tested negative for the genetic markers and tested positive for Celiac.  If you test postitive for one or both of the genes, it doesn't mean that you have it or even that you will ever get it.  Approx. 30% or so of the population has the genetic marker but only about 1% actually gets Celiac.

 

I know it's frustrating when all you really want is a clear diagnosis.  The testing just isn't that great and everyone is different in terms of symptoms, antibody levels, etc. 

[glux]

I saw my GP yesterday and he diagnosed me with hypoglycemia as I get extremely fatigued after eating just about every meal.  It's already difficult trying to figure out what to eat, now this, ugh.  From what I've read, this is a common problem for Celiacs?  Does this improve with time/healing?  Any diet recommendations to avoid the crash after eating every meal?  I've been eating more vegetables than normal, which I discovered actually have a lot of carbs so I should probably cut back on them and eat more protein/fat?

 

Thanks for the info NoGlutenCookies.   I see the GI doc in about a week.  I presume that they would order the DNA test?

[GF Lover]

Hi Glux, In your initial post you mentioned Histamines.  Have you considered doing a trial for a histamine intolerance?  This could account for your itching.  Many histamine blockers do not help this sufficiently.  You can do a two week trial eating Histamine free (or as close as possible) to test it.  Bananas and Chocolate have high histamines in them.  

 

Good luck with your further testing.

 

Colleen

[GottaSki]

I am now reacting to foods that I've eaten all of my life without any issues, including:

 

Bananas, avocados, pistachios, chocolate, almonds, possibly dairy and a few others that I can't think of right now.  Basically, it seems as if my diet is very restricted as I have varying reactions with varying intensities.  

 

 

I love Paul's sore throat analogy too...this could very well why you are reacting to so many foods.

 

But also wanted to second Colleen's suggestion to look into Histamine Intolerance.  All of the foods you listed above -- along with tomato and cheese that I'm assuming were in both gluten-free pizza and mexican -- are either high in histamine or trigger the release of histamine within the body.  

 

I am surprised your doctor mentioned histamine release -- not many suggest this.  You may want to trial other antihistamines as not everyone responds the same to them.  For me, I am ridiculously sensitive to all medications, but finally found extremely low dose of Allegra twice per day ( generic is Fexofenodine over the counter) helps me while others are helped with a combo of H1 and H2 meds as your doctor suggested.

 

A trial removing histamine containing and inducing foods might be a great first step -- if you don't see improvement then it would be time to consider a larger elimination diet/trial.

 

It is extremely frustrating to weed out food intolerances -- I wish you luck as you move forward

[glux]

Thank you for the ideas regarding histamines.  After trying anti histamines for a couple of weeks, I came across histamine intolerance and avoided all foods that are high in histamines or cause your body to produce histamines and it seems that I saw a slight improvement.  Maybe I'll revisit this.

 

GottaSki - I noticed in your sig that you mention that high histamine foods were causing a heat/exercise allergic type reaction.  My itching gets much worse after I exercise.  What were your symptoms during/after exercising?  Did you have a rash or just itching?  Do you think it's related to Celiac?  I don't have a rash, just itching.   

[GottaSki]

For me....itching comes last during exercise reaction and is rare, but itching is definately a release of histamine during exercise (more precisely...the body's inability to process/manage histamine that is released during exercise).  For me i first turn bright red...this got worse as the decades piled up.  In my twenties and thirties I became extremely lethargic in heat and was only able to exercise hard early in the am or in the snow...in my forties came the addition of abdominal bloat during exercise, bright red spread to more of my body and breathing issues became scary....I have had itchy reaction but it is not my first response.  Oh and I get a runny nose when exercising or temp change (hot or cold) that got worse with time as well.

 

While part of the reason for an overload of histamine can be caused by the damage of Celiac Disease which damages the small intestine so it is unable to produce DAO - an enzyme used to regulate histamine within the body -- not enough is known to determine if Celiac triggered my Mast Cell/Histamine Issues or vice versa -- currently I'm of the chicken/egg mind set -- we may never know which came first.

 

Certainly not ALL folks with histamine/mast cell issues are Celiac (and most people with Celiac do not have histamine issue), so it is prudent to get properly screened.

 

If I'm remembering correctly, you have removed gluten for long enough that the antibody tests would be invalid -- if you can tolerate eating a small amount of gluten per day -- I strongly suggest you eat a slice of bread per day for at least two months and get a full celiac antibody panel along with an endoscopy.  There are some folks with damage to the small intestine without testing positive on antibodies, so the endoscopy can determine damage to not only the small intestine but other parts of the digestive tract.

 

There is no problem experimenting with removing histamine foods and anti-histamines while still eating gluten.

[glux]

Thank you for the information.  

 

The itching does seem to be related to histamines both in food that I'm eating and released during exercise.  I've been trying to eat a low histamine diet the past few days and it seems to be helping a little bit.  The bigger question though, is why have I developed a histamine intolerance? 

 

Here's a typical day lately:

 

Wake up - feel OK, but my body is still sore from the inflammation from the previous day. 

Eat breakfast - feel OK for about an hour, then I start to get bloated, congested and brain fog.  Can still function at work.

Eat lunch - about an hour after eating lunch, the bloating, congestion and brain fog are still there, then comes the fatigue and inflammation...I could go to bed at 2pm most days and sleep all night.

Eat dinner - all of the above, more fatigued and some joint pain and muscle pain.

Occasional diarrhea if I eat foods high in histamines.

Wake up the next day - body is still sore from the inflammation from the previous day. 

Rinse and repeat.

 

Maybe I have another allergy that hasn't been identified yet that is "filling up my histamine bucket" throughout the day, not leaving much room for excess histamines ingested/released when eating?  Taking anti histamines seems to help a little.

 

I've been off of gluten for 4 months (not even certain that gluten is my problem anymore).  Could these daily symptoms and histamine intolerance still be part of the healing process of my gut, or do I really have a mast cell/histamine intolerance issue, and the gluten only made me react because wheat is high in histamines?  I know the only way to answer this question is to do a gluten challenge, but just looking for some possible insight and experiences from others who may have had similar recovery symptoms.

 

I also had some more blood work done to check my vitamin levels.  Here are the results:

 

Iron: 50 (reference range 40-170)

Vitamin B12: 914 (reference range 210-2000)

Vitamin D: 22.2 (reference range 25-80)

 

I'm taking a vitamin D3 supplement now as well as a B complex.

[GFinDC]

Hi Glux,

 

I don't know if you are aware that most soy sauce has gluten in it?  So Chinese food is not safe unless it is made with gluten-free soy sauce.

 

The immune reaction in celiac disease can last for 6 weeks to months.  So you can't expect to eat Chinese food one week and feel just fine with no symptoms for the next 3 or 4 weeks.  You said you were not sure you have a gluten reaction?   But you said earlier you had done a challenge by eating bread and had definite reactions.  I know it can be confusing trying to figure these food issues out on your own.  Especially when your gut is irritated and seems to react to just about anything you eat.  The way to get around the confusion is to take control of your diet.  Simplify  the diet and reduce the chances of getting gluten in your food.  Don't eat out at all for several months.  Only eat whole foods that you cook yourself.  Reduce the number of different food ingredients as much as possible for a while.  The fewer the number of foods you are eating, the easier it is to identify one that is causing a problem.  That's the idea behind elimination diets.

 

Your diet seems to be a problem and cause symptoms for you.  The answer is in your control because you control what you eat.  But it may take a much simpler eating plan to figure it out.

[glux]

Thanks for all of the replies.  Just a quick update.

 

I saw my GI doctor again and she ordered a Celiac DNA test.  I should have those results back in the next week or so.  She said that a gluten challenge is 4 weeks regardless of whether I do the blood test or biopsy.  I thought it was only 2 weeks for the biopsy?

 

I have had a couple more reactions in the past week or so and I'm now better able to tell when I'm reacting and monitor the progression of the symptoms.  I'm still not sure it's Celiac as I'm pretty certain I haven't eaten gluten, yet I'm still having these reactions. They don't seem to correlate to any specific type of food.

 

This is a typical reaction:

 

• Nausea is generally the first symptom and starts about a half hour before the following symptoms:
• Itchy skin
• itchy scalp
• muscle pain / numbness (back and sometimes neck)
• extreme fatigue
• fingers cold (possibly inflammation restricting blood flow..?)
• bloating
• smelly burps
• tingling in hands, general skin tingling
• irritability / anxiety
• difficulty concentrating

 

I'm getting passed from doctor to doctor at this point and feel like I'm getting nowhere.  I'm seeing an allergist next week for some environmental allergy tests as it seems that my symptoms are worse at home where we have pets and possibly dust allergens. 

 

Another symptom that seems to be related is my hair will be thicker or thinner depending on whether or not I've been reacting.  I also get white hairs spread evenly throughout my scalp that come and go, also depending on whether I've been reacting or not.  The hair issue has been going on for about the past 10 years.  My hair hasn't gotten thicker or thinner overall, just varies quite a bit and the white hairs come and go.  I'll sometimes find hairs that are half white and half brown.  Should I see a dermatologist for this as maybe it could help with my overall diagnosis?

 

Just wanted to see if anyone had any thoughts on these things.  Thanks.

[NoGlutenCooties]

Just a word of caution... the genetic testing for the "Celiac gene" won't tell you if you have Celiac or not.  All it will tell you is if you have one or more of the genes that pre-disposes you to Celiac.  But about 1/3 of the population has at least one of the genes, while only about 1% have Celiac.

 

From what I've read, the gluten challenge is at least 2 weeks for the biopsy and 2 - 3 months for the blood test - depending on how long you've been gluten-free.  I wouldn't trust the blood test to be accurate after just 4 weeks.  Also, keep in mind that the tests are fairly unreliable and false-negatives happen.  There is also the possibility of non-Celiac-gluten-intolerance in which case the tests will be negative but you get to enjoy all of the same symptoms that a Celiac person gets.

 

Your symptoms sound like very familiar gluten-related symptoms, but all Celiac-related symptoms have other possible causes, so it makes it very difficult to know for sure.  How "pretty sure" are you that you haven't eaten gluten?  Have you eaten out?  Eaten any processed foods?  Shared a kitchen with gluten-eaters?  Used utensils, cutting boards, etc. that you used before going gluten-free?  The stuff is everywhere and can be tough to get completely away from at first.

[ravenwoodglass]

The gene test can backfire for some of us. At present they only test for the two most common genes but there are diagnosed celiacs who don't carry either gene. I am one of them.

You mention a rash. Have you had a derm biopsy looking for DH? Sorry if you already addressed this as I don't have time before work to read back through the whole thread. A diagnosis of DH is a diagnosis of celiac and no more testing would be needed.

[glux]

The gene test can backfire for some of us. At present they only test for the two most common genes but there are diagnosed celiacs who don't carry either gene. I am one of them.

You mention a rash. Have you had a derm biopsy looking for DH? Sorry if you already addressed this as I don't have time before work to read back through the whole thread. A diagnosis of DH is a diagnosis of celiac and no more testing would be needed.

 

I haven't had a biopsy as the rash doesn't look to be severe enough to be DH, but I could be wrong.  I have a derm appointment next week to look at the white hairs that come and go on my scalp, hoping that I can find out what is causing the white hairs which may be another piece to the puzzle.  Right now, I'm not sure if I want to go through a 4-12 week gluten challenge, but if I have enough symptoms that point to malabsorption then I may do the challenge to confirm.  I've read on these forums that the white hairs could be caused by a copper deficiency and I already have a vitamin D deficiency and borderline low iron. 

 

The rash is only there when I'm reacting pretty badly for a few days, so it may not be there next week, but I'll have them take a look.

 

Another symptom that I recently realized has completely gone away is canker sores on the inside of my lips.  I had them for years but haven't had one since going gluten free (lite, as I have challenged a few times) about 4 months ago.

[ravenwoodglass]

I haven't had a biopsy as the rash doesn't look to be severe enough to be DH, but I could be wrong.  I have a derm appointment next week to look at the white hairs that come and go on my scalp, hoping that I can find out what is causing the white hairs which may be another piece to the puzzle.  Right now, I'm not sure if I want to go through a 4-12 week gluten challenge, but if I have enough symptoms that point to malabsorption then I may do the challenge to confirm.  I've read on these forums that the white hairs could be caused by a copper deficiency and I already have a vitamin D deficiency and borderline low iron. 

 

The rash is only there when I'm reacting pretty badly for a few days, so it may not be there next week, but I'll have them take a look.

 

Another symptom that I recently realized has completely gone away is canker sores on the inside of my lips.  I had them for years but haven't had one since going gluten free (lite, as I have challenged a few times) about 4 months ago.

Be sure to mention that you think you may have DH. If you don't have any active lesions some will agree to fit you into their schedule to biopsy when you do. Ask the doctor how they do the biopsy. If they biopsy the lesion they are clueless about DH as they need to biopsy next to an active lesion not on it. Special testing needs to be done at the lab so if they are not looking for DH they won't find it.

[glux]

Be sure to mention that you think you may have DH. If you don't have any active lesions some will agree to fit you into their schedule to biopsy when you do. Ask the doctor how they do the biopsy. If they biopsy the lesion they are clueless about DH as they need to biopsy next to an active lesion not on it. Special testing needs to be done at the lab so if they are not looking for DH they won't find it.

 

Thanks for the info, I'll be sure to mention it to the doc.