Am I struggling with celiac symptoms?

[Azayleah]

Hi guys, I’m hoping you can help me here as I’m running out of ideas. About 3-4 months ago I started developing some strange symptoms, mainly that I would feel tingling in my muscles and muscle weakness. Whenever this happened I would completely freak out, even went to A&E once as my left arm felt numb and eventually the right side of my face went numb. Have been struggling with this for a few months now and originally was told it was anxiety so carried on as normal but symptoms seem to be getting worse. These include: 

 Numbness/weakness/tingling in left arm and right side of face

Sudden onset of feeling like loads of small needles are pricking into the palms of my hands, the upper back of my legs, my buttocks and my spine 

Burning, itching and hot/cold sensation in skin (arms and scalp)

Itchy rash elbow creases

Suddenly feeling very cold when it’s not cold, hands and feet either extremely cold or very hot and sweaty

Tension headaches and pain in right side of neck

Waves of extreme dizziness and nausea 

Black parts and white mucus in stools, smells like vomit

Frequently bloated and stomach pain

Everyday at around 4pm become very suddenly exhausted and generally dizzy and feeling unwell

Heart palpitations and sudden panic when any symptoms happen

These symptoms used to happen daily but mainly in episodes or waves. However I’ve gradually gotten worse and as of Saturday my symptoms have become quite intense. I feel constantly dizzy/unbalanced and entirely drained, feeling as though I’ve not slept when I have and even sleeping more than usual. I’m generally feeling quite sick and my stomach feels sensitive daily but intermittently this can become quite intense in waves and my stools are very soft and oily all the time.
I have gone to the doctors a number of times and was told it’s anxiety but they finally agreed to do a blood test. I’m not entirely sure what they tested me for but I was just told that my bloods were normal (I’m receiving a copy myself tomorrow) which has left me feeling really hopeless and upset. I feel extremely unwell and dizzy, I’m not able to do think properly and have weird nerve sensations happening almost daily. I scared the heck out of myself and convinced myself that if my bloods were normal I must have a neurological issue, however went for a neurological and eye exam today and was told that my eyes are in great health and I’m neurologically sound.

I previously mentioned the idea of a digestive issue or possibly infection to my doctor and he brushed it off as he said I would have very intense nausea and digestive symptoms. However, due to being diagnosed with IBS many years ago I never assumed that my diarrhoea, stomach pain and constant bloating would be related to the scary new nerve pains and sensations. After reading about celiac I am becoming curious as to whether it’s possible that this could be causing me to feel constantly drained, unbalanced and unwell? 
I’m going to mention doing a test to my doctor tomorrow as I can’t live like this anymore, it’s preventing me from doing anything, but thought I would see beforehand whether these symptoms are in lin with celiac disease

[cristiana]

Hello Azayleah and welcome to the forum!

I'm very sorry that you have been feeling so unwell.  

Coeliac disease can cause some strange and unpleasant symptoms and I have had some of those you describe.  Numbness, tingling, dizziness, quite apart from the usual gastric symptoms.

Before we go any further, can you tell us:

• Are you consuming gluten?
• When you say your bloods have come back normal, did these tests include a coeliac blood test?  

Cristiana

 

[Azayleah]

1 minute ago, cristiana said:

Hello Azayleah and welcome to the forum!

I'm very sorry that you have been feeling so unwell.  

Coeliac disease can cause some strange and unpleasant symptoms and I have had some of those you describe.  Numbness, tingling, dizziness, quite apart from the usual gastric symptoms.

Before we go any further, can you tell us:

• Are you consuming gluten?
• When you say your bloods have come back normal, did these tests include a coeliac blood test?  

Cristiana

 

Hi Cristiana, thanks for your reply, it’s good to know my feelings aren’t completely rare as they really freaked me out. Yes I’m consuming gluten and always have been despite having been advised to try a low FODMAP diet. I was never told what exactly my bloods were tested for so I don’t know if coeliac was included but the doctor never mentioned it at all so I’m asking for a copy of the results tomorrow to see for myself. I have bought an at home testing kit but have read online they’re not very reliable and it’s best to ask doctor for a test

[trents]

Essentially all the symptoms you describe are consistent with celiac disease. Neurological manifestations are common in the celiac population and oily stools are a classic symptom of celiac disease. Please be aware that most physicians are woefully unknowledgeable about celiac disease and what knowledge they do have is often very dated. You should get blood antibody testing specifically designed to detect celiac disease. Here is a primer: https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/. The tTG-IGA test is most commonly ordered by physicians but a full celiac panel would be much more likely to catch someone who may be having atypical antibody responses. The tTG-IGA is very specific for celiac disease but is not the most sensitive test that can be run. Many physicians fail to inform their patients that eating regular amounts of gluten for about two months leading up to the antibody test is necessary to ensure the testing is valid. Too many people start eating gluten free prior to the testing.

Edited October 6, 2021 by trents

[Azayleah]

1 minute ago, trents said:

Essentially all the symptoms you describe are consistent with celiac disease. Neurological manifestations are common in the celiac population and oily stools are a classic symptom of celiac disease. Please be aware that most physicians are woefully unknowledgeable about celiac disease and what knowledge they do have is often very dated. You should get blood antibody test for celiac disease. Here is a primer: https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/. The tTG-IGA test is most commonly ordered by physicians but a full celiac panel would be much more likely to catch someone who may be having atypical antibody responses. The tTG-IGA is very specific for celiac disease but is not the most sensitive test that can be run. Many physicians fail to inform their patients that eating regular amounts of gluten for about two months leading up to the antibody test is necessary to ensure the testing is valid. Too many people start eating gluten free prior to the testing.

Thanks so much for your reply, that’s some really interesting information. I’m actually somewhat relieved to hear my symptoms may be leading to a diagnosis as I’ve felt so awful and unwell so hopefully have a bee direction to look in. I certainly agree and don’t think that my doctor has even considered coeliac, he wants to do an MRI but if normal said he will have to diagnose me with “medically unexplainable neuropathy” which doesn’t help at all, especially as I keep seeming to have episodes where I feel much much worse and have other symptoms alongside the nerve sensations. I’m going to ask about doing a test with my doctor tomorrow and hopefully he will consider it, luckily I’ve not tried a gluten free diet yet so should be okay if tested

[cristiana]

2 minutes ago, Azayleah said:

Hi Cristiana, thanks for your reply, it’s good to know my feelings aren’t completely rare as they really freaked me out. Yes I’m consuming gluten and always have been despite having been advised to try a low FODMAP diet. I was never told what exactly my bloods were tested for so I don’t know if coeliac was included but the doctor never mentioned it at all so I’m asking for a copy of the results tomorrow to see for myself. I have bought an at home testing kit but have read online they’re not very reliable and it’s best to ask doctor for a test

Hi Azayleah

I have to say I remember being in a similar situation to your own and being beside myself at times, wondering where all the bizarre symptoms would end.   My gastric symptoms were the last to present - had they not, I don't think anyone would have thought to test me for coeliac disease -  I'd probably still be wondering what was wrong with me!

Yes, do find out what tests you have had and report back.  If coeliac disease hasn't been looked into, ask your doctor if s/he do a full coeliac panel of blood tests.  It would also be good to see if your doctor has done any tests to find out if you are deficient in B12, ferritin and Vitamin D.

Keep us posted, we're here for you!

Cristiana

 

 

 

[cristiana]

And one more thing that I forgot to say ...  if your doctor has tested for coeliac disease, but your blood results are negative, you may still have it.  A small number of coeliacs have negative blood tests.  The only way to be sure in this instance is to have an endoscopy to rule it in/out.  Or you may have non-coeliac gluten sensitivity, which is another condition that can cause some nasty symptoms but in this case you will not have damage to your gut.

C.

[M. Martha]

On 10/6/2021 at 4:14 PM, cristiana said:

And one more thing that I forgot to say ...  if your doctor has tested for coeliac disease, but your blood results are negative, you may still have it.  A small number of coeliacs have negative blood tests.  The only way to be sure in this instance is to have an endoscopy to rule it in/out.  Or you may have non-coeliac gluten sensitivity, which is another condition that can cause some nasty symptoms but in this case you will not have damage to your gut.

C.

I agree. My antibody test was negative, but I stopped gluten the minute it came to my attention through my sister’s diagnosis of celiac and in 2 weeks the oppression I’d felt (a lack of a motivation for living) lifted off of my brain. I never looked back but started charging forward healing my gut. My endoscopy was positive for celiac with depressed microvilli and I had a gene for celiac. I also had SIBO and intestinal permeability that caused generalized muscle pain. I am now gluten free, dairy free, processed food free (including gluten free food), no white sugar, no nightshades (cause muscle pain), rarely eat out, and have never felt better in my life (including when I was a child - I’m 68). I have a lot of energy. I eat food my body recognizes as food - pastured eggs, meat, homemade chicken soup, organic vegetables, fruit, raw honey, cooked organic kale and chard, and sauerkraut. My experience is that the doctors I saw knew little about healing the gut after treatment for the gastro issue they were addressing (zifaxin for SIBO or vancomycin for clostridium difficile). I got some reinforcement when that oppression lifted and I never looked back. I had spent years addressing emotional and spiritual issues as well - prayer and Jesus. May you be completely restored to health. Dr. Fasano says it’s time to stop thinking of celiac disease as only a disease of the digestive system, but also a disease of the brain. Be blessed. 

[CP-RRT]

On 10/6/2021 at 1:44 PM, Azayleah said:

Hi guys, I’m hoping you can help me here as I’m running out of ideas. About 3-4 months ago I started developing some strange symptoms, mainly that I would feel tingling in my muscles and muscle weakness. Whenever this happened I would completely freak out, even went to A&E once as my left arm felt numb and eventually the right side of my face went numb. Have been struggling with this for a few months now and originally was told it was anxiety so carried on as normal but symptoms seem to be getting worse. These include: 

 Numbness/weakness/tingling in left arm and right side of face

Sudden onset of feeling like loads of small needles are pricking into the palms of my hands, the upper back of my legs, my buttocks and my spine 

Burning, itching and hot/cold sensation in skin (arms and scalp)

Itchy rash elbow creases

Suddenly feeling very cold when it’s not cold, hands and feet either extremely cold or very hot and sweaty

Tension headaches and pain in right side of neck

Waves of extreme dizziness and nausea 

Black parts and white mucus in stools, smells like vomit

Frequently bloated and stomach pain

Everyday at around 4pm become very suddenly exhausted and generally dizzy and feeling unwell

Heart palpitations and sudden panic when any symptoms happen

These symptoms used to happen daily but mainly in episodes or waves. However I’ve gradually gotten worse and as of Saturday my symptoms have become quite intense. I feel constantly dizzy/unbalanced and entirely drained, feeling as though I’ve not slept when I have and even sleeping more than usual. I’m generally feeling quite sick and my stomach feels sensitive daily but intermittently this can become quite intense in waves and my stools are very soft and oily all the time.
I have gone to the doctors a number of times and was told it’s anxiety but they finally agreed to do a blood test. I’m not entirely sure what they tested me for but I was just told that my bloods were normal (I’m receiving a copy myself tomorrow) which has left me feeling really hopeless and upset. I feel extremely unwell and dizzy, I’m not able to do think properly and have weird nerve sensations happening almost daily. I scared the heck out of myself and convinced myself that if my bloods were normal I must have a neurological issue, however went for a neurological and eye exam today and was told that my eyes are in great health and I’m neurologically sound.

I previously mentioned the idea of a digestive issue or possibly infection to my doctor and he brushed it off as he said I would have very intense nausea and digestive symptoms. However, due to being diagnosed with IBS many years ago I never assumed that my diarrhoea, stomach pain and constant bloating would be related to the scary new nerve pains and sensations. After reading about celiac I am becoming curious as to whether it’s possible that this could be causing me to feel constantly drained, unbalanced and unwell? 
I’m going to mention doing a test to my doctor tomorrow as I can’t live like this anymore, it’s preventing me from doing anything, but thought I would see beforehand whether these symptoms are in lin with celiac disease

My other half is experiencing all the same symptoms whenever he is stressed and/or gets "glutened." Last night he said that it felt like he was having a heart attack because the pain was radiating from his left arm to his neck and chest. He didn't want to go to the ED. He took a Benzo and that helped to prevent further escalation, but he believes that the restaurant we ate at gave him 1 gluten pancake and 1 gluten-free pancake because they tasted different and the person who took his order has attitude about gluten-free questions. It is really tough to see him go through this amount of pain and it takes a toll on his mental health. The GI MD is not returning calls, except to other MDs when he is in the ED, and that is to protect his medical license (since there is more accountability - documentation - of his medical responsibility to his patients). I don't want him to lose his colon, but he has had a flare up since December 2021 and it is now the end of July 2022. So, upsetting that medicine is so caveman style still.

[CP-RRT]

On 10/13/2021 at 5:12 AM, M. Martha said:

I agree. My antibody test was negative, but I stopped gluten the minute it came to my attention through my sister’s diagnosis of celiac and in 2 weeks the oppression I’d felt (a lack of a motivation for living) lifted off of my brain. I never looked back but started charging forward healing my gut. My endoscopy was positive for celiac with depressed microvilli and I had a gene for celiac. I also had SIBO and intestinal permeability that caused generalized muscle pain. I am now gluten free, dairy free, processed food free (including gluten free food), no white sugar, no nightshades (cause muscle pain), rarely eat out, and have never felt better in my life (including when I was a child - I’m 68). I have a lot of energy. I eat food my body recognizes as food - pastured eggs, meat, homemade chicken soup, organic vegetables, fruit, raw honey, cooked organic kale and chard, and sauerkraut. My experience is that the doctors I saw knew little about healing the gut after treatment for the gastro issue they were addressing (zifaxin for SIBO or vancomycin for clostridium difficile). I got some reinforcement when that oppression lifted and I never looked back. I had spent years addressing emotional and spiritual issues as well - prayer and Jesus. May you be completely restored to health. Dr. Fasano says it’s time to stop thinking of celiac disease as only a disease of the digestive system, but also a disease of the brain. Be blessed. 

Do you travel? 

My family is having issues with traveling. We research restaurants (and he still gets gluten from the contamination or because the staff are not careful and mix up the food with non-gluten-free stuff). We travel with a stove and gluten-free snacks, but that is no way to live when you are traveling/daily activities with family that do not have food allergies or GI issues. 

A cruise would be out of the question, so would an all-inclusive resort. 

[kenlove]

2 hours ago, CP-RRT said:

Do you travel? 

My family is having issues with traveling. We research restaurants (and he still gets gluten from the contamination or because the staff are not careful and mix up the food with non-gluten-free stuff). We travel with a stove and gluten-free snacks, but that is no way to live when you are traveling/daily activities with family that do not have food allergies or GI issues. 

A cruise would be out of the question, so would an all-inclusive resort. 

I travel pretty much all over.  much depends on where you  going and how much  research your  willing to do but in  any better hotel if you talk to the chef, they will understand and know what to do. Nost hotels at least here in  hawaii where 12% of the guests  have celiac, they have  dedicated kitchen  areas.

good luck

[Scott Adams]

19 hours ago, CP-RRT said:

Do you travel? 

My family is having issues with traveling. We research restaurants (and he still gets gluten from the contamination or because the staff are not careful and mix up the food with non-gluten-free stuff). We travel with a stove and gluten-free snacks, but that is no way to live when you are traveling/daily activities with family that do not have food allergies or GI issues. 

A cruise would be out of the question, so would an all-inclusive resort. 

If you eat out consider GliadinX enzymes, which break down gluten in the stomach before it reaches the intestines. They are a sponsor here, but I’ve been taking them for years before I eat out just in case there might be some contamination and I haven’t had issues.

[trents]

Recent research has identified eating out as the #1 undermining factor sabotaging the intentions of those believing they are eating gluten free.