New Diagnosis But Still Struggling with Symptoms

[Emma R.]

I am 20 years old and was just diagnosed with Celiac a week ago. For backstory, I hadn't had any issues until 3 months ago while driving home I had an "episode". My heart was racing, chest was so tight I couldn't breathe, nausea, blurred vision, and loss of feeling in my hands. I worked at a bakery at the time, so I was exposed to gluten and consumed it regularly. But up until this day I have had no symptoms. This episode cleared up after a few hours, but I continued to get them more and more with some resulting in me having to go to the ER. My heart rate wouldn't come down and I would get the awful "feeling of doom".  All of the test results came back clear for my heart, but they did discover I did have hypothyroidism. Doctors thought that was the cause of the episodes but after I became regulated they didn't go away. 

This has been going on for three months and my anxiety got so bad I didn't want to leave my home, I was having insomnia night after night. I would get terrible chest pain and I genuinely thought it was might be terminal because no one knew what was wrong. But after finally doing a celiac test I came back positive. The relief alone of having an answer made me feel so much better. And after a week of no gluten, I have had a reduction in overall symptoms. But yesterday while on a walk (my stamina is very low because of 3 months of staying home) I had another episode. It was relatively severe with not being able to breathe, heart racing, nausea, and shaking, and lasted 2 hours (symptoms got less intense over time). To my knowledge, I have not had any gluten, and I've been very careful of reading labels and cross-contamination. 

So my questions for the celiac community are: 

Has anyone experienced any symptoms like this?

I haven't met anyone who has episodes like I do so my biggest fear is something else may be going on. 

Is it normal to have random intense symptoms as my body heals that aren't from ingesting gluten? 

My doctor told me symptoms may take months to subside but is the random intensity that doesn't seem normal. 

Thank you for reading all of this, its been a very difficult time and I'm not sure where to go from here and how to get back to a normal life. 

[trents]

Welcome to the forum, Emma!

One of the issues that usually accrues from celiac disease is vitamin and mineral deficiencies. celiac disease (Celiac Disease) damages the villous lining of the small bowel which is where almost all of the nutrition in the food we eat is absorbed. The damage to this area of the intestines decreases the efficiency of absorption, and depending on how long this damage has been going on and it's severity, the more serious the vitamin and mineral deficiencies become. The electrical activity of the heart is regulated by certain minerals (potassium being an important one but I'm sure others come into play). It wouldn't surprise me if this was at the source of the issue. On this forum we routinely recommend to newly diagnosed celiacs that they invest in some gluten-free vitamin and mineral supplements to address this issue. Typically, we recommend a high potency B-complex, D3 (5000 to 10,000 IU daily) and Magnesium (glycinate or citrate forms) to get a jump start on healing the body. It can take two years or more after going gluten free to experience complete healing of the SB villi.

Also, I assume you are no longer working at the bakery. Can you confirm this? Working at a bakery would bad news for a celiac because of flour dust be breathed in, getting trapped by mucous and eventually winding up in the gut.

Edited March 31, 2023 by trents

[Emma R.]

3 minutes ago, trents said:

Welcome to the forum, Emma!

One of the issues that usually accrues from celiac disease is vitamin and mineral deficiencies. celiac disease (Celiac Disease) damages the villous lining of the small bowel which is where almost all of the nutrition in the food we eat is absorbed. The damage to this area of the intestines decreases the efficiency of absorption, and depending on how long this damage has been going on and it's severity, the more serious the vitamin and mineral deficiencies become. The electrical activity of the heart is regulated by certain minerals (potassium being an important one but I'm sure others come into play). It wouldn't surprise me if this was at the source of the issue. On this forum we routinely recommend to newly diagnosed celiacs that they invest in some gluten-free vitamin and mineral supplements to address this issue. Typically, we recommend a high potency B-complex, D3 (5000 to 10,000 IU daily) and Magnesium (glycinate or citrate forms) to get a jump start on healing the body. It can take two years or more after going gluten free to experience complete healing of the SB villi.

Also, I assume you are no longer working at the bakery. Can you confirm this? Working at a bakery would bad news for a celiac because of flour dust be breathed in, getting trapped by mucous and eventually winding up in the gut.

I did stop working at the bakery. It wasn't because of the celiac I was just so sick I was unable to work. But, I'm glad I did quit because there is no telling what working their would have done. 

[shadycharacter]

2 hours ago, Emma R. said:

I am 20 years old and was just diagnosed with Celiac a week ago. For backstory, I hadn't had any issues until 3 months ago while driving home I had an "episode". My heart was racing, chest was so tight I couldn't breathe, nausea, blurred vision, and loss of feeling in my hands. I worked at a bakery at the time, so I was exposed to gluten and consumed it regularly. But up until this day I have had no symptoms. This episode cleared up after a few hours, but I continued to get them more and more with some resulting in me having to go to the ER. My heart rate wouldn't come down and I would get the awful "feeling of doom".  All of the test results came back clear for my heart, but they did discover I did have hypothyroidism. Doctors thought that was the cause of the episodes but after I became regulated they didn't go away. 

This has been going on for three months and my anxiety got so bad I didn't want to leave my home, I was having insomnia night after night. I would get terrible chest pain and I genuinely thought it was might be terminal because no one knew what was wrong. But after finally doing a celiac test I came back positive. The relief alone of having an answer made me feel so much better. And after a week of no gluten, I have had a reduction in overall symptoms. But yesterday while on a walk (my stamina is very low because of 3 months of staying home) I had another episode. It was relatively severe with not being able to breathe, heart racing, nausea, and shaking, and lasted 2 hours (symptoms got less intense over time). To my knowledge, I have not had any gluten, and I've been very careful of reading labels and cross-contamination. 

So my questions for the celiac community are: 

Has anyone experienced any symptoms like this?

I haven't met anyone who has episodes like I do so my biggest fear is something else may be going on. 

Is it normal to have random intense symptoms as my body heals that aren't from ingesting gluten? 

My doctor told me symptoms may take months to subside but is the random intensity that doesn't seem normal. 

Thank you for reading all of this, its been a very difficult time and I'm not sure where to go from here and how to get back to a normal life. 

Were you evaluated for wheat allergy as well? I suppose gluten intolerance doesn't exclude wheat allergy.  Wheat or other food allergies may cause an anafylactic reaction during exercise called WDEIA* or FDEIA**. But not sure if your symptoms qualify as an anafylactic reaction if your doctors didn't think of it. 

Still doesn't explain the latest reaction, unless perhaps you're extra sensitive and used some wheat starch based gluten free product, or is sensitive to something else in addition to gluten. 

 

* Wheat dependent exercise induced anafylaxis

** Food dependent exercised induced anafylaxis

[Scott Adams]

Welcome to the forum, and I must say that your vivid description sounds just like what I went through when I was in my mid-20's, which led to my diagnosis. I also had several trips to the emergency room, and thought it was heart issues, but it was panic attacks, and I also had strong vertigo symptoms that came with it--like I was literally standing on the edge of a cliff while being very dizzy, tunnel vision, etc.

The good news is that these symptoms went away within a few weeks of going gluten-free, and after a several months they didn't come back.

[Emma R.]

2 hours ago, Scott Adams said:

Welcome to the forum, and I must say that your vivid description sounds just like what I went through when I was in my mid-20's, which led to my diagnosis. I also had several trips to the emergency room, and thought it was heart issues, but it was panic attacks, and I also had strong vertigo symptoms that came with it--like I was literally standing on the edge of a cliff while being very dizzy, tunnel vision, etc.

The good news is that these symptoms went away within a few weeks of going gluten-free, and after a several months they didn't come back.

Were the panic attacks because of the undiagnosed celiac or were they a separate issue? When I would go to the ER they would tell me it was a panic attack and sometimes I think my episodes can trigger panic attacks. 

[Scott Adams]

In my case they are definitely related to undiagnosed celiac disease, no question about it. I had severe flattened villi by the time I was diagnosed, and severe malabsorption issues, so I suspect that vitamin and mineral deficiencies were triggering psychological and neurological issues. I also had gluten ataxia for decades, until I began seriously supplementing:

 The reason I know my issues were related to my gut damage is due to how quickly the worst of my panic attacks went away after going gluten-free. The symptoms were ongoing for years, then stopped within weeks of going gluten-free (I also had to eliminate 5-6 other food groups for a few years which also triggered issues, but was able to add those back later).

[Emma R.]

5 minutes ago, Scott Adams said:

In my case they are definitely related to undiagnosed celiac disease, no question about it. I had severe flattened villi by the time I was diagnosed, and severe malabsorption issues, so I suspect that vitamin and mineral deficiencies were triggering psychological and neurological issues. I also had gluten ataxia for decades, until I began seriously supplementing:

 The reason I know my issues were related to my gut damage is due to how quickly the worst of my panic attacks went away after going gluten-free. The symptoms were ongoing for years, then stopped within weeks of going gluten-free (I also had to eliminate 5-6 other food groups for a few years which also triggered issues, but was able to add those back later).

If you don’t mind me asking which food groups did you cut out to help heal. I’ve been eating gluten for 20 years so I feel as though there is plenty of damage. 

[Wheatwacked]

You don't mention how you were diagnosed but thank your doctor for being so on the ball. Three months to diagnosis is awesome. Especially with non traditional symptoms. Many take years.  the use of bromine as a dough conditioner may have caused your hypothyroidism.

Baker's Asthma "Baker’s asthma is a frequent occupational allergic disease caused mainly by inhalation of cereal flour, particularly wheat flour. It is considered one of the most common types of occupational asthma."

9 hours ago, Emma R. said:

It wasn't because of the celiac I was just so sick I was unable to work.

The Celiac Disease is why you were so sick.  There are more than two hundred symptoms that celiac mimicks due to it's autoimmune attack on the small intestine causing what doctors call malabsorption syndrome.It leads to functionally subclinical malnutrition. There are 20 essential vitamins and minerals absorbed in the small intestine, all subject to malabsoption. It all depends on your food intake which ones will affect you. Just in terms of your hypothyroid look at vitamin D plasma (low D is a common factor in autoimmune diseases and insufficient iodine can precipitate both hypo- and hyper- thyroid. If your bakery uses Bromine it could have caused your hypothyroidism.

Vitamin D Fact Sheet for Health Professionals "Most people in the United States consume less than recommended amounts of vitamin D. In fact, 2013–2016 NHANES data showed that 92% of men, more than 97% of women, and 94% of people aged 1 year and older ingested less than the EAR of 10 mcg (400 IU) of vitamin D from food and beverages"
 

 

Quote

 

A Review of Iodine Status of Women of Reproductive Age in the USA  Since the first NHANES in 1974, median urinary iodine concentrations for women of reproductive age have decreased below the WHO recommendation indicating that majority of women in the childbearing years are iodine deficient. 

" iodine deficiency is one of the leading causes of hypothyroidism ...Therefore, we have a problem that we do not take in enough iodine because we are fearful of causing thyroid dysfunction, but because of iodine deficiency, we have an epidemic of thyroid disorders that is currently only being treated by taking an over-prescribed drug that eliminates healthy thyroid functioning. ...improve iodine intake from diet or supplements rather than creating a levothyroxine-dependent hypothyroid population...  .Of 11 reviewed studies, seven included data from non-pregnant women ages 15–44 years indicating that the US population is at risk for iodine deficiency...Women of reproductive age in the USA are therefore iodine deficient according to the analysis of NHANES data. Since the original NHANES I (1971–1974) study, non-pregnant women have been below the WHO guidelines for UIC indicating inadequate iodine nutrition."    In the late 1950s, some bakeries were adding iodate to commercial bread mix as a dough conditioner or bread stabilizer [68], which provided a significant source of iodine in the average American diet. However, bread makers stopped using this iodide additive in the 1980s, possibly due to pressure exerted by health policymakers and the preference of brominated flour

Iodine is part of the halide group along with bromine, chlorine, and fluorine. These halides act as goitrogens and compete with iodine uptake into the thyroid, especially under iodine deficiency conditions. 

 

 

6 hours ago, shadycharacter said:

I genuinely thought it was might be terminal because no one knew what was wrong.

I think we have all felt that at one time or another. Once, after a few years of gluten free, while watching TV nibbling on some slices of hard salami (which has never bothered me and still doesn't), my brain started to spin and go down into a hole, similar to when I had nitrous oxide at the oral surgeon and was sliding down the barber pole to oblivion. The second time, a long time, months or years later, preserved food was not involved. Just feeling fine and bam! Profusive cold sweat, projectile vomit. Stopped throwing up long enough to make it to the bathroom where I continued to vomit and added explosive diahrea. A Rosemary's Baby event for me. It passed, and still shakey I went to sleep and woke up ok two hours later.

 

[Wheatwacked]

5 hours ago, Emma R. said:

If you don’t mind me asking which food groups did you cut out to help heal.

Here is a list of what to eat. Everyone is different about what not to eat.  It is important is to replete and start to store the essential vitamins you are missing.

Products allowed/disallowed in the Gluten Contamination Elimination Diet

[Scott Adams]

On 3/31/2023 at 2:48 PM, Emma R. said:

If you don’t mind me asking which food groups did you cut out to help heal. I’ve been eating gluten for 20 years so I feel as though there is plenty of damage. 

For me I had to avoid tomatoes, chicken eggs (which I replaced with fresh duck eggs), corn and milk/casein. After a few years I was able to add them back to my diet.