Allergy shots and celiac disease

[Elie]

I’ve been diagnosed a celiac since 2016.  I am a 68 years old female with Hashimoto’s, and I’ve had IBS symptoms for a few years before that. My diagnosis was positive for DNA markers, positive for IgA, IgE, and IgG but inconclusive for biopsy.   My doctor told me because I had 2 out of three, I should go gluten free which I have done and stayed true to it since then.  My symptoms have still not resolve to a good extent.  She said we have to look for something new.  She suggested allergy testing. After testing, I showed no food allergies but after 88 environmental scratches on my back, my back lit up with welts. I’m highly allergic to all grasses, all trees, most molds, pet danders and a half a dozen other things.  I showed no symptoms, I didn’t know I had allergies.  No runny nose, asthma, coughing or sneezing, just headaches and fatigue.  My allergy doctor suggested allergy shots which I happily accepted thinking, “finally” we are figuring this out.  Now here’s the kicker after following the instructions, nasal spray‘s, and Benadryl tablet, I received my 2 shots twice a week.  I had no reaction The first day to the shots until the next day when I woke up with annoying joint pain in my right wrist and in the palm of my left hand a knot that wasn’t there before.  I also had my usual joint pain and fatigue.  This was a brand new symptom I have never had before and it has not gone away.  With each shot I felt worse and worse. Fatigue, brain fog, and body aches that felt like the flu.  I keep chalking it up to a reacting to the allergens. I kept asking, do other people have these symptoms and all said no.  I’m three months into the treatment with the same symptoms and wonder if anyone else out there has the same symptoms. I’ve been to a rheumatologist and had x-rays of my wrists and hands and a rheumatoid blood panel, which all turned out negative except for high anti-nuclear antibody titer of 1:160.  High positive anti-nuclear antibody IgG of 114.  High anti-thyrogobulin IgG concentration of 140.  High anti-thyroid Peroxidase IgG concentration of 521.  

I’ve questioned whether the serum has gluten but it’s just saline.  I’m on my highest level of allergens now and will be for three more months before going to one shot a month.  Can anyone give me some enlightenment here?  Should I continue or not.  I’m so far into it now.  

[cyclinglady]

Why would your doctor (is she a board-certified allergist) suggest allergy treatment when you have no usual IgE related symptoms (itching, hives, swelling, sneezing, runny nose, etc.)?  I am not a doctor, but my IgE allergies can be made worse when my autoimmune disorders are flaring (all fall under the umbrella of hypersensitivity, google it).    Your tests results might be impacted by active celiac disease.  It is something to consider researching.  

You have celiac disease and Hashimoto’s (like me).  Know that you might have a third diagnosis developing (my third autoimmune is autoimmune gastritis) or your celiac disease is not being managed (gluten exposures or refractory).   Have you had your celiac antibodies re-checked lately?  Is your celiac disease active?  It can impact your joints.  

Your ANA is high.  While RA might have been ruled out for now, did you get screened for other things that effect joints like lupus or IBD? 

I would get a second medical opinion.  Something is wrong. 

Let me add that I had issues (like GERD). A repeat endoscopy revealed the I healed from celiac disease but that I had autoimmune gastritis.  So, now I know that if my stomach is acting up, it is most likely my Gastritis and not that my celiac disease is flaring.  For fatigue, achy body and feeling off, I often blame my Hashimoto’s.  For all I know (and my doctor has said) I have another AI brewing.  It just has not been identified.  I think doctors need to say, “You have autoimmune disease.  At this time it is attacking your small intestine (celiac disease), thyroid (Hashimoto’s) and stomach (Chronic Autoimmune Gastritis).  Let’s keep an eye out for possible RA, IBD, and Lupus since you have family members who have it.”.  That is how I wish it were presented.  If lucky, a person will stick with one AI issue for their entire life.  

Edited December 28, 2019 by cyclinglady

[ravenwoodglass]

Your allergy test reactions sound like mine prediagnosis. The allergist tested me for 99 things and the only thing I didn't react to was beech trees. He later said that was his clue that I was celiac and after being celiac for over 40 years I was referred to a GI doctor who confirmed celiac. After a few months the only true allergies I had turned out to be to my cats and dog and they are not severe enough for treatment. I just don't let my kitties sleep with me any more. It sounds like you are reacting very badly to the shots. IMHO they should not be making you as ill as it seems they are. It might be a good idea to get a second opinion from another allergist not associated with the one you are now seeing. Do be sure to double check that you are doing all you need to do as far as the celiac lifestyle is concerned. You may want to consider going with only whole foods for a bit and avoiding restaurants (if you're not already), make sure that everything you put in or on your body is gluten free and make sure any meds or supplements are safe.

[Ennis-TX]

Random bit of info I learned years ago, I can not get vaccinations, due to bad reactions to the preservatives and the adjuvant used in them. My immune system over reacts to the adjuvant, and has issues processing the preservatives (genetic)
Do you allergy shots utilize any forms of these? Or is it just a antihistamine in a saline solution?

And to a side note, my environmental allergies get worse when any of my Auto Immune issues flare. My recent bout with my ulcerative colitis made my allergies get much worse (Headaches from sinuses with coughing I do not sneeze or runnynose) and I ended up with a sinus infection.

[Elie]

10 hours ago, cyclinglady said:

Why would your doctor (is she a board-certified allergist) suggest allergy treatment when you have no usual IgE related symptoms (itching, hives, swelling, sneezing, runny nose, etc.)?  I am not a doctor, but my IgE allergies can be made worse when my autoimmune disorders are flaring (all fall under the umbrella of hypersensitivity, google it).    Your tests results might be impacted by active celiac disease.  It is something to consider researching.  

You have celiac disease and Hashimoto’s (like me).  Know that you might have a third diagnosis developing (my third autoimmune is autoimmune gastritis) or your celiac disease is not being managed (gluten exposures or refractory).   Have you had your celiac antibodies re-checked lately?  Is your celiac disease active?  It can impact your joints.  

Your ANA is high.  While RA might have been ruled out for now, did you get screened for other things that effect joints like lupus or IBD? 

I would get a second medical opinion.  Something is wrong. 

Let me add that I had issues (like GERD). A repeat endoscopy revealed the I healed from celiac disease but that I had autoimmune gastritis.  So, now I know that if my stomach is acting up, it is most likely my Gastritis and not that my celiac disease is flaring.  For fatigue, achy body and feeling off, I often blame my Hashimoto’s.  For all I know (and my doctor has said) I have another AI brewing.  It just has not been identified.  I think doctors need to say, “You have autoimmune disease.  At this time it is attacking your small intestine (celiac disease), thyroid (Hashimoto’s) and stomach (Chronic Autoimmune Gastritis).  Let’s keep an eye out for possible RA, IBD, and Lupus since you have family members who have it.”.  That is how I wish it were presented.  If lucky, a person will stick with one AI issue for their entire life.  

Thank you!  I agree with you and I did show negative for lupus.  I’m bringing back more questions to my doctors because you made more sense then they did.  Thank you again.

[Elie]

9 hours ago, Ennis_TX said:

Random bit of info I learned years ago, I can not get vaccinations, due to bad reactions to the preservatives and the adjuvant used in them. My immune system over reacts to the adjuvant, and has issues processing the preservatives (genetic)
Do you allergy shots utilize any forms of these? Or is it just a antihistamine in a saline solution?

And to a side note, my environmental allergies get worse when any of my Auto Immune issues flare. My recent bout with my ulcerative colitis made my allergies get much worse (Headaches from sinuses with coughing I do not sneeze or runnynose) and I ended up with a sinus infection.

Thank you.  There is only saline, no preservatives in the injection but I agree about it making me feel worse.  I’m going to speak to my doctor again.  Thank you!

[Elie]

9 hours ago, ravenwoodglass said:

Your allergy test reactions sound like mine prediagnosis. The allergist tested me for 99 things and the only thing I didn't react to was beech trees. He later said that was his clue that I was celiac and after being celiac for over 40 years I was referred to a GI doctor who confirmed celiac. After a few months the only true allergies I had turned out to be to my cats and dog and they are not severe enough for treatment. I just don't let my kitties sleep with me any more. It sounds like you are reacting very badly to the shots. IMHO they should not be making you as ill as it seems they are. It might be a good idea to get a second opinion from another allergist not associated with the one you are now seeing. Do be sure to double check that you are doing all you need to do as far as the celiac lifestyle is concerned. You may want to consider going with only whole foods for a bit and avoiding restaurants (if you're not already), make sure that everything you put in or on your body is gluten free and make sure any meds or supplements are safe.

Thank you

[Elie]

2 minutes ago, Elie said:

Thank you I feel you might be right on the clean eating.  With the holidays I have stayed gluten-free in restaurants but you just never know. I’m going to try eating very clean and cut out most grains along with wheat.  I’d like to see if my symptoms settle down. As for a second opinion, The problem with getting a second opinion on the shots is that it’s going to take me six weeks to get an appointment with a new doctor.  I’ll try to stick with the shots until then.   I don’t want to throw out all time and shots if it is allergies. Thank you

[Megamaniac]

Just wanted to share a little of my own experiences with allergie shots and or sublingual therapy. I've struggled with allergies for about 10 years. Finally got tested and started the sublingual therapy ( shots for a while but my insurance didn't cover those). I did the therapy for 3 years and everytime I was retested I had more allergies. By this time I should have been half way through my therapy and feeling better but I went from taking one allergy medication to 3 different ones plus the therapy. I finally just quit doing it after overhearing a couple ladies in the office talking about similar experiences. I was diagnosed with celiac about 3 months after quitting so I don't think there's any coincidence there. But for me the therapy wasn't worth it. I take claritin and flonase during my bad seasons and just deal with the mold,dust, and dander allergies by good housekeeping and air purifiers. 

[Elie]

Thank you, I’m getting very disheartened with all this information.  I will continue to eat clear and if I don’t feel better by April or so, will reconcider this.  If it keeps getting worse, I’ll quit sooner and do like you...just  manage.  You are all so kind for helping me.  Thank you!

[knitty kitty]

Elite, 

Have you had your Vitamin D level checked recently?  Low levels of Vitamin D have been found in Hashimoto patients.  Another vitamin that is often low is thiamine.  

I found an article that explains which vitamins can help.  

https://thyroidpharmacist.com/articles/most-common-nutrient-deficiencies-hashimotos/

Please don't lose hope.  Malabsorption from Celiac Disease results in vitamin insufficiency.  Celiacs have a higher metabolic need for certain vitamins and minerals.  Please discuss supplementing with your doctor.  

Hope this helps!

 

[squirmingitch]

22 hours ago, Elie said:

I’ve been diagnosed a celiac since 2016.  I am a 68 years old female with Hashimoto’s, and I’ve had IBS symptoms for a few years before that. My diagnosis was positive for DNA markers, positive for IgA, IgE, and IgG but inconclusive for biopsy.   My doctor told me because I had 2 out of three, I should go gluten free which I have done and stayed true to it since then.  My symptoms have still not resolve to a good extent.  She said we have to look for something new.  She suggested allergy testing. After testing, I showed no food allergies but after 88 environmental scratches on my back, my back lit up with welts. I’m highly allergic to all grasses, all trees, most molds, pet danders and a half a dozen other things.  I showed no symptoms, I didn’t know I had allergies.  No runny nose, asthma, coughing or sneezing, just headaches and fatigue.  My allergy doctor suggested allergy shots which I happily accepted thinking, “finally” we are figuring this out.  Now here’s the kicker after following the instructions, nasal spray‘s, and Benadryl tablet, I received my 2 shots twice a week.  I had no reaction The first day to the shots until the next day when I woke up with annoying joint pain in my right wrist and in the palm of my left hand a knot that wasn’t there before.  I also had my usual joint pain and fatigue.  This was a brand new symptom I have never had before and it has not gone away.  With each shot I felt worse and worse. Fatigue, brain fog, and body aches that felt like the flu.  I keep chalking it up to a reacting to the allergens. I kept asking, do other people have these symptoms and all said no.  I’m three months into the treatment with the same symptoms and wonder if anyone else out there has the same symptoms. I’ve been to a rheumatologist and had x-rays of my wrists and hands and a rheumatoid blood panel, which all turned out negative except for high anti-nuclear antibody titer of 1:160.  High positive anti-nuclear antibody IgG of 114.  High anti-thyrogobulin IgG concentration of 140.  High anti-thyroid Peroxidase IgG concentration of 521.  

I’ve questioned whether the serum has gluten but it’s just saline.  I’m on my highest level of allergens now and will be for three more months before going to one shot a month.  Can anyone give me some enlightenment here?  Should I continue or not.  I’m so far into it now.  

I'm still hung up on your rheumy testing. I think it's possible your Hashis is causing those highs on the ANA tests. Read this:

https://www.healthline.com/health/antinuclear-antibody-panel#results

Mayo Clinic has some good info on RA:

https://www.mayoclinic.org/diseases-conditions/rheumatoid-arthritis/diagnosis-treatment/drc-20353653

 

I have RA. I was dx'd in Jan. 2019 after testing in Nov. & Dec of 2018. My doc ordered X-rays of my chest (to make sure I didn't have TB which would preclude certain drugs to treat RA). The other X-rays were of both wrists, hands, & knees. There isn't really a RA test so it's more of a process of elimination with consideration of the symptoms. These are the test my doc did. Did your tests indicate anything about smooth or speckled patterning?

 

 

 

[Elie]

13 hours ago, knitty kitty said:

Elite, 

Have you had your Vitamin D level checked recently?  Low levels of Vitamin D have been found in Hashimoto patients.  Another vitamin that is often low is thiamine.  

I found an article that explains which vitamins can help.  

https://thyroidpharmacist.com/articles/most-common-nutrient-deficiencies-hashimotos/

Please don't lose hope.  Malabsorption from Celiac Disease results in vitamin insufficiency.  Celiacs have a higher metabolic need for certain vitamins and minerals.  Please discuss supplementing with your doctor.  

Hope this helps!

 

Thank you, yes I am taking 1000 mg Vitamin D and a multi along with Calm for mg and digestive enzymes.  They help

[Elie]

6 hours ago, squirmingitch said:

I'm still hung up on your rheumy testing. I think it's possible your Hashis is causing those highs on the ANA tests. Read this:

https://www.healthline.com/health/antinuclear-antibody-panel#results

Mayo Clinic has some good info on RA:

https://www.mayoclinic.org/diseases-conditions/rheumatoid-arthritis/diagnosis-treatment/drc-20353653

 

I have RA. I was dx'd in Jan. 2019 after testing in Nov. & Dec of 2018. My doc ordered X-rays of my chest (to make sure I didn't have TB which would preclude certain drugs to treat RA). The other X-rays were of both wrists, hands, & knees. There isn't really a RA test so it's more of a process of elimination with consideration of the symptoms. These are the test my doc did. Did your tests indicate anything about smooth or speckled patterning?

 

 

 

These are the same tests my doctor ran.  They already r/o Sjögrens.  I really believe this flare is from these shots.  I just don’t know if they are helping or flaring my autoimmune disease.  Thank you for your advice.  I’m defiately going to follow up on this.

[GFinDC]

Hi Elie,

I wonder if you have tried eliminating any other foods from your diet?  Nightshades can cause joint pain for some people.  Nightshades are potatoes, tomatoes, peppers, and eggplant.  Nightshades contain alkaloid chemicals that can build up in people who's livers' don't process them efficiently.  Then they cause problems.  If you want to test that theory, try eliminating all nightshades from your diet for a month or two.  It can take time for the body to get rid of the toxic chemicals.  It would not be a bad idea to eliminate soy also.

I had pretty bad allergies before going gluten-free, and had shots for them.  After going gluten-free my allergies reduced a lot and don't bother me as much now.  I still am careful about cam dats and dogs tho as they can cause symptoms still.

You've only been gluten-free for 3 years so it may be your body is still recovering from celiac damage.  I agree with stopping the allergy shots for a while to see if that improves things.  I hope you feel better soon.

Edited December 30, 2019 by GFinDC
added "not"

[Elie]

1 hour ago, GFinDC said:

Hi Elie,

I wonder if you have tried eliminating any other foods from your diet?  Nightshades can cause joint pain for some people.  Nightshades are potatoes, tomatoes, peppers, and eggplant.  Nightshades contain alkaloid chemicals that can build up in people who's livers' don't process them efficiently.  Then they cause problems.  If you want to test that theory, try eliminating all nightshades from your diet for a month or two.  It can take time for the body to get rid of the toxic chemicals.  It would be a bad idea to eliminate soy also.

I had pretty bad allergies before going gluten-free, and had shots for them.  After going gluten-free my allergies reduced a lot and don't bother me as much now.  I still am careful about cam dats and dogs tho as they can cause symptoms still.

You've only been gluten-free for 3 years so it may be your body is still recovering from celiac damage.  I agree with stopping the allergy shots for a while to see if that improves things.  I hope you feel better soon.

This is the very thing I am about to try.  I also think corn may be affecting me.  But all the nightshades you mentioned I will eliminate too.  I’m going to keep taking the shots until April that is the month I gave myself as the cut off point. But I am going to do all of your recommendations first and see if it helps. Thank you!

[Awol cast iron stomach]

Elie,

I had previous Dr's including allergist,gi, and dermatologist  miss me for decades. The allergist that finally helped me saw my reaction to IgE  testing and sent me to the allergist/ immunologist that trained her. She realized it was not IgE mediated, but she did not have the testing I needed so that's why she sent me to her former teacher . That one is the one who finally helped me. I knew since 5 years old something was wrong with me. She understood Celiac, Food intolerance, mast cell, asthma she had superior clinical/research experience most I met didn't. I still fondly remember telling her I was once diagnosed asthma, explained the medication I was prescribed I didn't take, as I didn't think I had asthma. I now see on tv this medication is a medication for COPD!  I still remember when I went through my series of test with the knowledge Dr. she said what do you think? I looked at the screen analyzed the data and said " you just proved I don't have asthma! I was right I don't have asthma! ". She smiled a subtle smile.

I found my Dr. I needed all my life!  It required a series of tests, shots to rule out IgE allergies, a good elimination diet, testing for autoimmune diseases,  a gluten challenge, blood , endoscopy , colonscopy. She left no stone unturned.

Besides the celiac issues I have include food intolerance, sensitive" twitchy" mast cells (although I am not fully "in/true" MCAS) I have aspects/ symptoms of it.  After my allergy shots and her waiting for my delayed immune response as they are not immediate IgE. She said what are your symptoms. I explained many of them in detail. She said those symptoms are your early symptoms remember those. I use those still do this day. I round out my repitoire here with dysautonomia ( a dysfunctional nervous system misdiagnosed for over 8 years.)

It was like a giant ball of knotted thread that I had to have a patient knowledgeable Dr who could slowly untangle each knot. I had to get control of each aspect of the trifecta of illness/dysfunction to get the full picture.

Interesting you say corn that's an issue for me as well. As for vaccinations I responded so poorly to my TB test last year, I had to get for employment( I passed the TB test) but I was very ill after it triggered my Dysatonomia/POTS for weeks. So I havent honestly tried any others as my immune system has been through enough the last 4 years. This year's fighting virus I caught in the fall also has me in the dysautonomia pit again. So I try not to upset the nervous system/ homeostasis.

I wish you luck and as the others above gave excellent advice of all of entails a knowledgeable Dr, healing, nutrition/ supplements for deficencies, and often time to know all that we have on our plate. Lots of self love, patience, acceptance, perspective, and perservance.

On my bad days I often remind myself that to others I am lucky as my medical issues are managed with diet, supplements, electrolytes, avoiding my food and environmental triggers which seems like a lot, but a "treatment" many others would wish for instead of the one they have for their disease.

Best of luck.

 

Edited December 30, 2019 by Awol cast iron stomach
Autocorrect incorrect

[Gemini]

On 12/29/2019 at 12:28 AM, Megamaniac said:

Just wanted to share a little of my own experiences with allergie shots and or sublingual therapy. I've struggled with allergies for about 10 years. Finally got tested and started the sublingual therapy ( shots for a while but my insurance didn't cover those). I did the therapy for 3 years and everytime I was retested I had more allergies. By this time I should have been half way through my therapy and feeling better but I went from taking one allergy medication to 3 different ones plus the therapy. I finally just quit doing it after overhearing a couple ladies in the office talking about similar experiences. I was diagnosed with celiac about 3 months after quitting so I don't think there's any coincidence there. But for me the therapy wasn't worth it. I take claritin and flonase during my bad seasons and just deal with the mold,dust, and dander allergies by good housekeeping and air purifiers. 

If you have already had a course of allergy shots, then sublingual therapy may not be as effective.  I have done both and the paperwork that came with the sublingual therapy warned about this.  Must be true as I had great success with the shots when I was younger but the sublingual.......not so much.  I am thinking of discontinuing it because the Benadryl and Zyrtec work OK with managing symptoms.  Celiac and allergies go hand in hand and some people just cannot get a big break from them. The getting older thing certainly does not help, either.  It’s very hard to find a good allergist who knows what they are doing.  I wish we could just re-boot our immune systems.......