advice for autoimmune immunologist appt

[emma6]

does anyone know what to expect from an immunologist appointment? i can't seem to find much information about what they do besides allergy testing.
are there any questions or blood tests i should ask for?

it took months to finally get an appointment and i'm so nervous its going to be a waste of time like every other specialist i've seen. especially since i feel this is my last resort since i've pretty much tried everything. already lost my job because im too sick to do anything i honestly don't know what to do anymore.

i've been gluten free for 9 months now with no improvements at all even though my celiac levels have gone down. the majority of my symptoms are not typical celiac symptoms either so i'm still convinced there is something else making me sick in addition to celiac. but no matter how many doctors or specialists i see none of them have a clue what it could be.

i've already seen an two allergists for full air and food allergy testing by both skin prick and blood test. everything came back normal including total igE. so they said i could rule out allergies.

saw two different ENTs who couldn't find anything wrong with my nose or throat.

been given every type allergy tablet, nasal spray (steroid and anti histamine) and ant acid/ PPIs (even though i've never had acid reflux symptoms) but nothing works.

i have also tested negative to ANA and RF so i'm worried the immunologist will be uninterested and dismiss me like other doctors have

the allergy type symptoms i have are 24/7 and don't change depending on what i do or eat.
- constant runny nose and sneezing worse in the morning for 5 years
- constant mucus and blood in throat for over a year which is worse than any cold/flu i've ever had
if i don't cough it up every half and hour i end up gagging/choking and throwing up
- dry nose and mouth
- dead skin on inside on cheeks in morning
- no actual cough / lungs are clear / breathing is normal
- occasional sore throat and ears
- exfoliative cheilitis for 9 years

- severe joint pain knees and elbows
- palpitations /ventricular ectopic heartbeat
- always cold with numb hand and feet & chilblains
- nerve pain in legs/ restless legs/ crawling feeling
- jaw pain from chewing and trouble swallowing food
- swollen glands in neck over a year
- feeling of fever hot/cold /dizzyness
- itchy rash after sun exposure
- eye sensitivity to light
- dents in fingernails

i also have low blood sugar symptoms but without my blood sugar ever being in the low range when symptomatic the lowest blood sugar reading i've got is 4.4 mmol / 79mg. if i don't eat every 3 hours i get shaking, headache, irritable, light headed feeling like i'm about to faint which stops as soon as i eat something.

[Hummingbird-Hill]

I have Sjogrens Syndrome. Many of my symptoms are yours. Go to a rheumatologist for a checkup. I wish you well.

 

[cyclinglady]

Research and ask about Mast Cell Activation Syndrome/Disorder besides ruling out another autoimmune disorder.  

Jebby, a forum member, is a premie doctor who also has celiac disease:

 

[Jmg]

Some general advice. Don't assume they've read all your notes/are completely up to date with where you're at. Have a note / printout of your symptoms in bullet form as you listed above. Have dates of when you went gluten free and any changes you've noted since. Be prepared to answer questions about your diet and lifestyle.

5 hours ago, emma6 said:

the majority of my symptoms are not typical celiac symptoms either

Quite a few are things I experienced which resolved after gluten and dairy free.  

Good luck!

[knitty kitty]

Hello.  The cheilitis and the itchy rash after sun exposure, the sensitivity to light, and dents in fingernails, and the tingling cold extremities and palpitations are symptoms of deficiency of B vitamins, especially B 3, niacin, and B12, and iron deficiency and vitamin A and D deficiencies.

I experienced something similar when I was looking for answers and the doctors didn't recognize it.  Deficiency diseases aren't familiar to doctors anymore. 

The peeling cheeks may be a Candida overgrowth which often happens with low vitamin B's.  

Have you been taking any vitamins?  To make up for a deficiency, more than the Recommended Daily Allowance should be taken.  RDA's were set in the fifties and many consider them to be too low.  

Please ask your doctors about possible deficiencies in B vitamins.  Celiac Disease is a malabsorption disease.  It takes time for the gut to heal and absorb nutrients efficiently.  It is difficult to "catch up" once a deficiency has started without some help from additional vitamins.  

I hope this helps on your journey to wellness.

 

P.S.  there's a connection between Mast Cell Activation Syndrome and  Vitamin D deficiency. 

 

[emma6]

21 hours ago, Hummingbird-Hill said:

I have Sjogrens Syndrome. Many of my symptoms are yours. Go to a rheumatologist for a checkup. I wish you well.

 

 

thank you for the suggestion. i will definitely ask the specialist about that, i actually asked a doctor about sjogrens testing a few months ago but since i don't have dry eye symptoms they dismissed it right away.

 

11 hours ago, cyclinglady said:

Research and ask about Mast Cell Activation Syndrome/Disorder besides ruling out another autoimmune disorder.  

Jebby, a forum member, is a premie doctor who also has celiac disease:

 

thank you so much i'll  definetely look into it

[emma6]

11 hours ago, Jmg said:

Some general advice. Don't assume they've read all your notes/are completely up to date with where you're at. Have a note / printout of your symptoms in bullet form as you listed above. Have dates of when you went gluten free and any changes you've noted since. Be prepared to answer questions about your diet and lifestyle.

Quite a few are things I experienced which resolved after gluten and dairy free.  

Good luck!

thank you! thats so true. the written referral is only two sentences which barely describes 5 percent of whats wrong. they wouldn't let me make an appointment for months because the referral listed fatigue first and "they dont see people with chronic fatigue" but my fatigue is so mild its the least of my problems.

thats good to hear im dairy free aswell im still hoping i'll just start getting better on my own

[emma6]

11 hours ago, knitty kitty said:

Hello.  The cheilitis and the itchy rash after sun exposure, the sensitivity to light, and dents in fingernails, and the tingling cold extremities and palpitations are symptoms of deficiency of B vitamins, especially B 3, niacin, and B12, and iron deficiency and vitamin A and D deficiencies.

I experienced something similar when I was looking for answers and the doctors didn't recognize it.  Deficiency diseases aren't familiar to doctors anymore. 

The peeling cheeks may be a Candida overgrowth which often happens with low vitamin B's.  

Have you been taking any vitamins?  To make up for a deficiency, more than the Recommended Daily Allowance should be taken.  RDA's were set in the fifties and many consider them to be too low.  

Please ask your doctors about possible deficiencies in B vitamins.  Celiac Disease is a malabsorption disease.  It takes time for the gut to heal and absorb nutrients efficiently.  It is difficult to "catch up" once a deficiency has started without some help from additional vitamins.

I hope this helps on your journey to wellness.

P.S.  there's a connection between Mast Cell Activation Syndrome and  Vitamin D deficiency. 

 

thanks i've been tested for vitamin deficiencies recently and am still taking vitamin supplements. i had very low iron and borderline vitamin d last year, they are in the normal range now but that hasn't changed any symptoms, if only it was that simple.

 

[Gemini]

On 4/7/2017 at 1:08 AM, Hummingbird-Hill said:

I have Sjogrens Syndrome. Many of my symptoms are yours. Go to a rheumatologist for a checkup. I wish you well.

 

Hummingbird-Hill....you took the words right out of my mouth!    I was going to suggest testing for Sjogren's because many of those symptoms are the same for Sjogren's. I also have Sjogren's and it is a b%$@# compared to Celiac.  

Request SS-A and SS-B antibody testing.  Here is a link that explains Sjogren's testing better than I can.     http://emedicine.medscape.com/article/332125-workup  I just had the antibody testing done because I tested positive.  However, not all people with Sjogren's trip the antibody tests so having it be negative does not rule it out, regardless of what the AMA says.  It's like Celiac testing.....you are testing for autoimmune disease and the immune system can modulate so it can be a crap shoot.

I wish you the best of luck with the docs!

[emma6]

thank you so much Gemini,  my appointment went really well, he straight away suspected sjogrens syndrome before i even had a change to bring it up!!

he found markings on my legs called livedo raticulitis which i was unaware of and the rash i assumed was DH, he thinks is something else although i didn't catch the name of it. he also thinks my poor circulation in hands and feet is raynauds syndrome.

i had an ENA panel which i believe included the SS-A and SS-B antibodies along with very long lists of other blood tests i havn't had before. he was very knowledgeable unlike the GPs who kept telling me negative ANA = no autoimmune disease.

i dont know if i'm in denial but i keep second guessing it because my dryness symptoms are so mild. i keep thinking my nose could be dry from an allergy treatment i had last year which used a laser/uv light caused scabbing on the inside of my nose.

are you guys on medication for sjogrens?

[Jmg]

It's good to hear of a positive appointment Emma   It looks like you may be able to add to your auto immune poker hand

Reading your symptoms some of them like palpitations for instance resolved for me on the diet. Which made me think that:

On 4/7/2017 at 5:32 AM, emma6 said:

i've been gluten free for 9 months now with no improvements at all even though my celiac levels have gone down. the majority of my symptoms are not typical celiac symptoms either so i'm still convinced there is something else making me sick in addition to celiac. but no matter how many doctors or specialists i see none of them have a clue what it could be.

may also have a refractory celiac element even if the levels are going down? 

https://glutenintoleranceschool.com/non-responsive-celiac-disease-research-with-dr-vikki-petersen/

Just something to ask the doctor about? 

Best of luck!

[Gemini]

9 hours ago, emma6 said:

thank you so much Gemini,  my appointment went really well, he straight away suspected sjogrens syndrome before i even had a change to bring it up!!

he found markings on my legs called livedo raticulitis which i was unaware of and the rash i assumed was DH, he thinks is something else although i didn't catch the name of it. he also thinks my poor circulation in hands and feet is raynauds syndrome.

i had an ENA panel which i believe included the SS-A and SS-B antibodies along with very long lists of other blood tests i havn't had before. he was very knowledgeable unlike the GPs who kept telling me negative ANA = no autoimmune disease.

i dont know if i'm in denial but i keep second guessing it because my dryness symptoms are so mild. i keep thinking my nose could be dry from an allergy treatment i had last year which used a laser/uv light caused scabbing on the inside of my nose.

are you guys on medication for sjogrens?

Emma.........I also have Reynaud's.  It did improve on the gluten-free diet so symptoms are not as severe as they were when I not diagnosed with Celiac.  Remember....all this BS is caused by too much inflammation in the body, which the root cause of is Celiac.  Tame down inflammation with the right diet and symptoms lessen for everything else.  That was my experience.  Sounds like you have a good doc because they never look for Sjogren's.  I had to figure it out myself and then testing proved me correct, unfortunately.

My feelings on meds is if your symptoms are bothering you tremendously and impinge on living a normal life, then you can talk to your doc about it. I do not like taking meds and have never bothered with them. I have severe symptoms too but it's been like this for so very long, it is my normal.  Symptoms can be mild to severe and it's up to you what you decide to do about them. I treat symptoms myself and use the Biotene line of products to help with the dryness in my mouth. Biotene mouthwash is fantastic........it has a really clean minty taste without being overpowering. It's very soothing on your mouth because it contains no alcohol, like most mouthwashes do.  It's specifically formulated for dry mouth symptoms.

For my very dry eyes, I have to use Restasis eye drops (Rx).  I tried going off of them and my eyes got really bad so I have had to accept using them probably for the rest of my life. They work really well for me, which is good because I hate using them. There is no pain with it but annoyance that I am dependent on them for better eye comfort.

I would also suggest regular exercise to help with the circulation issues. I must admit, I do not go to doctor's all that much. I do not go to Rheumatologist's because they all seem to push meds. I also do not want to spend the rest of my life jumping from one doc to another.  When you have multiple autoimmune problems, they want you to see someone for every problem.  I find that eating really clean and healthy, regular exercise, and trying as hard as one can to mitigate stress, goes a long way to me feeling good. But if you need to take something because of your symptoms, then do what you need to do for comfort. Everyone has their own level.....

Please keep us updated.  It is not often I meet another person with, potentially, the same AI problems I have. If you ever develop Hashi's thyroid disease, we would be identical AI twins!    Sorry for the humor but sometimes you have to laugh about it or it drives you crazy.  Good luck with your testing!

 

[GFinDC]

I get dry eyes from drinking tea.  A reaction to it for some reason.  Anyway, just thought I'd mention it as in one case at least a food reaction can cause dry eyes.

[emma6]

@Jmg

 thanks for the link, i didn't know you could have refractory celiac even with normal antibody levels. i thought i was out of the danger zone with that one.

i've already taken eating whole foods while avoiding gluten and cross contamination to the absolute extreme because with every month i wasn't getting better i thought there must be a tiny amount of gluten sneaking in but its got to the point where i'm so extremely strict with it i know there is something wrong other than just gluten.

@Gemini

thank you so much for all the advice this is all so helpful. i feel the same way about medication, drugs freak me out so i try not to take anything unless i absolutely have to. i'm struggling so much just to get though the day now, so i might be open to trying some form of medication depending what it is. i just want to be as prepared and informed as possible for what they are going to suggest as treatment during my next appointment. since he did say even if i test negative for sjogrens he would still suspect i have it

i do exercise as much as i can with my joint pain but can't do much more than walking because the pain is so bad.

four autoimmune diseases sounds horrible, i don't know how you do it. hopefully i don't have hashi thyroid as well, i haven't been tested for hashimoto antibodies only TSH which came back normal.

@GFinDC thank you for the suggestion thats really interesting, i don't have dry eyes at all yet

[Jmg]

Certainly your allergy symptoms are suggestive of other things going on. I have high IGE, suffered from asthma and hay fever and I sneeze when I'm in the baking section of stores. I think that's either defensive to stop wheat ingestion or its my body telling me to move on and leave the doughnuts be  but regardless it's a different immune reaction that hasn't been impacted by the diet.

At nine months gluten free you're still in the healing range though, so as long as the gluten isn't somehow getting in there's a possibility that some of your symptoms will improve further. Antibody levels seem to vary wildly depending on the person so its difficult to generalize. Many doctor's recommend a year between starting the diet and retesting.  That may simply be easy for administration purposes, but it may also screen out those who take a little longer to react positively to the diet?

4 hours ago, emma6 said:

i didn't know you could have refractory celiac even with normal antibody levels. i thought i was out of the danger zone with that one.

From a UK diagnostic sheet: 

'Refractory coeliac disease is characterised by persistence or recurrence of malabsorptive symptoms and signs, together with villous atrophy on small intestinal biopsy, despite maintenance of an adequate gluten-free diet for over 12 months.'

Again they wait for the full 12 before diagnosing this, so hopefully your last 3 months will be good ones.

Maybe you could try some thinking outside the box. We have had someone on here who lives by a farmers field and was reacting to his wheat crop at harvest time. Others have changed wheat containing shampoo's, suspect toothpastes or make-up etc! 

 

[emma6]

On 14/04/2017 at 6:39 PM, Jmg said:

Certainly your allergy symptoms are suggestive of other things going on. I have high IGE, suffered from asthma and hay fever and I sneeze when I'm in the baking section of stores. I think that's either defensive to stop wheat ingestion or its my body telling me to move on and leave the doughnuts be  but regardless it's a different immune reaction that hasn't been impacted by the diet.

thats so funny i can imagine you walking through the store haha  im very over sensitive to alot of smells like paint, perfumes, candles which make my allergy symptoms worse but it still persists 24/7 regardless of where i am or what im doing.

that's very interesting yes i'm still hoping i will have some improvement from treating celiac even if its minor, i've checked all shampoos/toothpastes and products.

i don't think i have refractory celiac, my iron levels have improved alot so at least that a good sign.

[Lama]

Hi Emma, I know its been a long time and I dont know if you still log in to this account but I was just wondering how things are going for you and if you got an explanation for your problems?

I have exfoliative cheilitis for 6 months now and just starting to discover the links to gluten, leaky gut, immune sytem etc. 

[cristiana]

46 minutes ago, Lama said:

Hi Emma, I know its been a long time and I dont know if you still log in to this account but I was just wondering how things are going for you and if you got an explanation for your problems?

I have exfoliative cheilitis for 6 months now and just starting to discover the links to gluten, leaky gut, immune sytem etc. 

Hi Lama

It has been a while, but I hope you might hear from Emma, or perhaps someone else with a similar problem.  If not, it may be worth starting up a new thread.

I hope someone can be of help.

Cristiana