Celiac Disease, Sore throat and swollen glands

[Alessio]

Hello everyone,

My name is Alessio, I'm a 25 year old male and for 24 of my 25 years I've been healthy as a rock. Things changed in July 2016 when I decided to quit smoking using Chantix. 3 weeks in the treatment to quit smoking I started suffering from insane anxiety (an entire week of depersonalization) and daily panic attacks, I was hospitalized for a week and sent home with Clonazepam (Klonopin) for the following couple of months which at the time helped a lot. At the time I was quite convinced that what I went through must have been a side effect of chantix but almost a year later and with the Celiac diagnosis I sort of suspect that quitting smoking might have triggered Celiac Disease for me, hence the panic attacks and the anxiety. 

Around November 2016 I started suffering from throat flares, which was found to be acid reflux ( I very rarely suffered from heartburn, maybe a couple of occasions) but the throat flare was constant, from the moment I ingested something in the morning till when I went to bed. Turned out to be caused by Celiac as well (as soon as i started my gluten-free diet in late December the flare just vanished over a week time).

I had my biopsy 5 days ago, on the 20th of April and in the GI notes he wrote that there were no signs of cancer, acid damage or ulcers but he could see villous atrophy. Leading up to the biopsy I had to go back to eating gluten for a month a half and that's where the current problems started. I have had a sore throat for the last 4 and a half weeks and 2 lymph nodes very close to the adam's apple (just above it, slightly to the side on both sides) have gotten hard. I've had an ultrasound on the one on my left ( which was the very first one to appear) and it showed a 2cm growth that showed no sign of malignancy, this node at the time was tender and moveable ( a good sign I've been told). On the right side of my neck the node seems to be hard and not moveable. I've had a CT scan for my neck ( I haven't personally seen the results yet) but my doctor does not seem concerned. I have been tested for Strep and Mono and both turned out to be negative.  

2 weeks ago I started suffering from a very acute burning sensation just between my breasts and shoulders on both sides, it lasted for 3 days straight and woke me up several times and the fourth day i woke up with soreness ( which still persists) in the same areas that were burning, this lead my doctor to test me for Rheumatoid Factor and presence of ANA, the RF turned out to be 10 ( <12 is not indicative of disease) and my ANA were positive to a titer of 1:80 with a speckled pattern, again my doctor shows no signs of concern regarding this. 

I am suffering from chronic fatigue at the moment and being a carpenter that really doesn't make life easy. I have lost around 20 pounds in the last 2 months, went from my standard 180 pounds to 160 and to today I don't know if I can attribute that to my gluten-free diet ( and minor cutoff of junk food) or whether there might be a second underlying issue going on right now. All in all since doing my gluten challenge I haven't been feeling well.

My question is, can what's been going on in the last month ( hard nodes, sore throat, fatigue, weight loss and inflammation outside my gut) be just another reaction to gluten? I'm 5 days into the gluten-free diet again and no improvements yet, I know that it usually takes a couple of weeks to have effect.

Thanks for your time, and I have learned tons from this website about dealing with Celiac Disease, Thank you.

Alessio

[GFinDC]

Hi Alessio,

Celiac disease can cause 300 different symptoms, so it covers a wide swath.  Recovery from, celiac damage can take up to 18 months, or more.  It takes a while for the immune system to wind down it's attack on the body.

I know thyroid nodules are quite common in people and 90% or more are benign and no problem.  But there is a condition called Hashimoto's Thyroiditis that can cause thyroid swelling and pain.  Hashi's is another autoimmmune condition and is associated with celiac disease.  Maybe your doctor should test you for it?

[Alessio]

Hi GFinDC,

 I haven't considered my thyroid so far given that back in November 2016 my TSH value was in the normal range ( it was the only test that I had done then). Would I need to request a specific test for Hashimoto's? I will bring it up to my GP and see where we go from there. Thanks for the info.

[GFinDC]

Hi Alessio,

The Dr. can do a test for TPO antibodies to detect Hashimoto's Thyroiditis.  TSH levels can vary with Hashimoto's, both high and low levels are possible at times.  The autoimmune attack varies for some reason.

[Jmg]

Hello and welcome

On 4/25/2017 at 8:22 PM, Alessio said:

I sort of suspect that quitting smoking might have triggered Celiac Disease for me, hence the panic attacks and the anxiety. 

There's a documented relationship between the two so your suspicions are likely well founded: Open Original Shared Link

As CyclingLady says above, celiac Open Original Shared Linkit can affect including those you cite. Try searching this forum and you'll likely find similar accounts. 

If you can stick to the diet the healing process should begin. Good luck! 

 

[Alessio]

Well, test results came back and thyroid seems great, all values are in norm and antibodies are low. Also requested a complete blood count and everything is in the norm there as well. 

Unfortunately I'm feeling worse as days go by, little broken vessels are starting to show up on my breasts, the top part of my chest,my collarbone and my shoulders are just burning non stop throughout the day, I'm using Voltaren emulgel and taking as many Tylenol as allowed but the relief is minimal. I honestly can't tell how serious what's going on is. My chest feels on fire and I'm spending most of my time in bed. I'm starting to feel quite sad with what is happening because my doctor seems clueless with what's going on, every test that's being done is resulting negative but I'm physically falling apart in the meantime.  
Hopefully something comes up soon or I might just hit the ER because this is starting to be unbearable.

[knitty kitty]

Alessio,  

So sorry you're having such a rough go of it.  

You might want to reconsider using NSAIDs.  There's evidence that use of Nsaids, Ppi's, and Ssri's are linked to persistent villus damage.  

Open Original Shared Link 

And you and your doctor should consider vitamin deficiencies.  Celiac Disease causes malabsorption.  Malabsorption causes vitamin deficiencies. Doctors don't always recognize vitamin deficiency symptoms anymore.  Many B vitamin deficiencies manifest in the skin as rashes; Vitamin C deficiency as broken blood vessels.  Vitamin D deficiency is linked to thyroid problems. A good B complex vitamin supplement, minerals, and fat soluble vitamins A and D, and omega 3 supplements might be needed.  

Open Original Shared Link

Consider a whole foods paleo diet, just fresh meat and veggies.  Nothing processed.  Cut out dairy, corn and other grains, and beans.  And cut out nightshade vegetables (potatoes, tomatoes, peppers and eggplants) because they can increase gut permeability, as does high fructose corn syrup.

You might find a low histamine diet helpful, too. A low histamine diet cuts out anything fermented like sauerkraut, wine, and condiments like mustard and mayo, and things that have been smoked, most fish, shellfish, bananas, strawberries, and citrus fruits, and nuts.  And spinach.  

Yeah, it does look rather bleak, but my tummy thanked me.  These were all things I figured out that worked for me.  And it doesn't have to be permanent.  As you heal, you may gradually add back some foods.  It may take several months before you're ready to add foods back.  Don't rush healing.  Complete healing may take eighteen months or longer, but you should be feeling better before then.

Sincerely hope this helps us on our continuing journey towards health and happiness.

 

 

[Jmg]

7 hours ago, Alessio said:

I'm starting to feel quite sad with what is happening because my doctor seems clueless with what's going on, every test that's being done is resulting negative but I'm physically falling apart in the meantime.  
Hopefully something comes up soon or I might just hit the ER because this is starting to be unbearable.

Try to stay positive. Each negative test does at least give your doctors information, because sometimes its only through a process of exclusion that they can come to the right answer. 

What are you eating at the moment? Are you taking any supplements?

[ironictruth]

On 4/25/2017 at 3:22 PM, Alessio said:

My question is, can what's been going on in the last month ( hard nodes, sore throat, fatigue, weight loss and inflammation outside my gut) be just another reaction to gluten? I'm 5 days into the gluten-free diet again and no improvements yet, I know that it usually takes a couple of weeks to have effect.

Thanks for your time, and I have learned tons from this website about dealing with Celiac Disease, Thank you.

Alessio

Yes. It can takes weeks to months or longer to feel better. As well as reactions can be delayed. 

 my brother with celiac thought he was having a heart attack. I remember during one of my gluten challenges lying in bed with pain in my chest and behind my back,  I can only describe it as what felt like contractions it kept coming and going in these waves. I also was thinking I was having a heart attack at the ripe old age of 36.  But I add the disclaimer that I'm not a diagnosed Celiac, just a weak positive on blood work and some increased cellular changes in the biopsy.

The spots on your chest...brOken vessels, are  these new or are you thinking you're just starting to notice them for the first time?   because when you do not feel well you start to find things that you had not noticed before. Trust me I think it's pretty normal most of us do it  but it can really scare the hell out of you. make sure that you had your liver enzymes checked.

 Are you off of all the psychiatric medications that you were on previously? Chantix is Basically a psych a med. Klonopin can have some really wacky withdrawl symptoms Too. 

[Alessio]

@ Knitty Kitty,

I have been told to stay off any NSAIDS since I've had blood in my stools a couple of months ago and the GI report after the biopsy noted that I have a mild form of peptic duodenitis right now (luckily I haven't been feeling any abdominal pain since stopping the challenge). I had a Vitamin B12 test around a month ago that showed my values slightly over 300 , which I think is normal? I'll likely go and buy some vitamin complex later in the day. I'm all for bland diets, I have been avoiding fats and acidic foods like the plague since my tummy problems in the past months.

@ Jmg,

I'm aware that it's good that a lot of stuff is coming back negative, it just takes so long every time , at least 2 weeks to schedule an appointment with my doctor (in Vancouver the doctor/# of patients ratio is ridiculous) and since we're not finding anything I'm getting the impression from my doctor that he's starting to not believe me. Unfortunately after my Chantix episode, I've been branded as anxious and it's quite easy to underestimate things at that point. 
My diet is mostly rice, chicken,salmon, potatoes, Gluten free bread/Pasta, cold cuts like chicken breast,turkey,mortadella, broccoli,asparagus,green beans, bananas,,almond milk, gluten-free cereal, eggs, rarely bacon, zucchini, granola bars (gluten-free), that's pretty much the core of it, I am sure that gluten is out of the question because I've replaced all pots and pans recently and sanded and resealed all countertops in the house.  Now the only thing that I can think of that might have gluten are cigarettes, I've read tons of posts about them and I can't say I've found a definitive answer but I'm planning on quitting smoking again in the next month because I can't really leave anything untried right now.
Apart from food and smoke, I do not drink alcohol,  I'm on a 2 week course of Dexilant for the duodenitis, I occasionally take ativan for sleep, and a lot of Tylenol for pain management right now.

@ Ironictruth,

The broken vessels I'm sure are very recent, I sort of saw them develop in the last week and a half, it started on breast, spread to the other and then towards the shoulders. They pretty much match the skin that's burning these days. I can't tell if it's inflammation or nerve pain honestly.
Yes, I've been off Chantix since August 2016 and Klonopin since November 2016, I occasionally (maybe twice a month) take ativan for sleep. 

Thanks for the consideration guys.

[GFinDC]

Hi Alessio,

Some celiacs react to oats like they do wheat, rye, and barley.  So it might be worth eliminating that possibility.  If you do have an oat reaction, you are esentially still eating gluten if you have foods with oats.

[ironictruth]

Did you have AST, ALT Alkaline Phosphatase and bilirubin checked recently, since the burning and blood vessels started? 

[Alessio]

The thing about oats is that when I was first getting glutened I could tell in around half an hour if something was hurting me or not and it didn't happen with oats. Then again, anything is worth trying right now so I'll try to avoid them for now.

I had a liver panel at the beginning of February and the only higher value was the AST. This is what it looked like: 

Bilirubin:  14     (<17)
Alkaline Phospatase:    62   ( 40-145 )
AST:  42   (<36)
ALT:  41   (<50)

So nothing too alarming 3 months ago. My mother has had hepatitis C years ago and has autoimmune hepatitis. 

[plumbago]

On 4/25/2017 at 3:22 PM, Alessio said:

I sort of suspect that quitting smoking might have triggered Celiac Disease for me, hence the panic attacks and the anxiety. 

Whoa, I can't imagine doing a gluten challenge. Congratulations and condolences. What you say above is so interesting, because for a couple of years after my diagnosis, I kept asking myself/pitying myself, "what happened? Why now? What changed?" and then ding dong, I realized that just a year or two before, I had quit smoking. (I did not use any aids.) This was significant to me because in doing some research, I learned that smoking is immuno-suppressive. Who knows where the reality really lies, but at the time I told myself that there was a link.

Open Original Shared Link

[ironictruth]

31 minutes ago, Alessio said:

The thing about oats is that when I was first getting glutened I could tell in around half an hour if something was hurting me or not and it didn't happen with oats. Then again, anything is worth trying right now so I'll try to avoid them for now.

I had a liver panel at the beginning of February and the only higher value was the AST. This is what it looked like: 

Bilirubin:  14     (<17)
Alkaline Phospatase:    62   ( 40-145 )
AST:  42   (<36)
ALT:  41   (<50)
 you were right nothing is extremely alarming. But with the mildly elevated level and your mother's history and your symptoms it may be worth asking the Doctor Who did the original panel to rerun it to make sure that
So nothing too alarming 3 months ago. My mother has had hepatitis C years ago and has autoimmune hepatitis. 

While there is nothing seriously alarming it may be worth asking the Doctor That did the liver panel to check it again now that it's been three months to make sure the AST goes down.  liver enzymes can be elevated in Celiac disease but with your family history and the broken blood vessels It may be worth Re-checking. 

 I know you were in pain but try to lay off the Tylenol as well.  Jesus everyone is taking everything away from you! No gluten, Oats, Tylenol, no benzos, no ibuprofen.

[Jmg]

13 hours ago, Alessio said:

My diet is mostly rice, chicken,salmon, potatoes, Gluten free bread/Pasta, cold cuts like chicken breast,turkey,mortadella, broccoli,asparagus,green beans, bananas,,almond milk, gluten-free cereal, eggs, rarely bacon, zucchini, granola bars (gluten-free), that's pretty much the core of it,

It sounds good to me. It could be that food isn't the culprit here but just in case I'd suggest keeping a food diary, just a brief record of what you eat and how you feel at the time. 

The gluten free cereal, granola and bread/pasta may be the hardest on your digestion in the first few weeks of the diet. I'm loath to tell you to give them up because I know how much you want some variety and some connection to your old diet, but those would be the ones to consider I guess. You know to check cold cuts carefully? some of them can have gluten. 

The advice here usually is to treat the first 6 months as almost a standalone period where you do as much as possible to support the healing process. So obviously gluten free, but then as few processed foods as possible also. I switched from cereal toast etc to omelettes for breakfast so I could include plenty of veggies as filling for instance. 

6 hours ago, Alessio said:

The thing about oats is that when I was first getting glutened I could tell in around half an hour if something was hurting me or not and it didn't happen with oats.

You may find that your responses change over time on the diet. It's also possible that you'll have a different reaction to oats than gluten but they will still be a problem for you. I think the theory is that the avenin protein resembles gluten Open Original Shared Link

Try not to get freaked out by all of us suggesting to cut this, that or the other out! The first few months are tricky for many, if not most, but it's also true that lots of us get to add stuff back as we heal.

 

[knitty kitty]

I apologize for the mistake.  Tylenol is not an Nsaid.  However, Dexilant is a Ppi (proton pump inhibitor) which may be exacerbating your symptoms, like that previous article I posted said. Hopefully you won't have to take it much longer. 

And this article explores how medications may be absorbed abnormally with Celiac Disease:

https://www.celiac.com/articles/24738/1/Can-Celiac-Disease-Impair-Drug-Therapy-in-Patients/Page1.html

Hope you're feeling better.