Newhike- Sharing My Experience

[Newhike]

I am so happy I found this community. I was researching for my symptoms for a long time and was not able to find any clear answers . I am 45 yr old female and in 2017 I was diagnosed with  hypothyroidism and was put on medication. Due to my hypothyroidism I had been doing my blood test every year and for last 2 years I had been seeing elevated value for WBC which my doctor  was not able to figure out as my other test redults were coming normal.  From last 2 year I started to feel occasional heart palpitation,  dizziness, chest tightness and  some time difficulty breathing while jogging. I had my echocardiogram done, Pulmonary function test done  and they all came normal. I still kept on feeling difficulty breathing after exercise like jogging. I also suffer the occasional constipation since childhood.  Around 9 months back I started to get numbness in my palms and feet interestingly only during sleeping. And this has become a routine now to wake up in middle of night due to numbness. I was first told that it might be due to pinched nerve in my neck. I took couple of physiotherapy sessions and it did not help at all.

Recently  in Sept 2023,  I was out of country for two weeks and when I came back   I was wizzing in night after dinner, started to have very bloated tummy, very frequent burps and tightness in chest, cough.  It because so bad that I was scared of going to bed in night as I was not able to breath and had to sleep in elevated position  in order to get some sleep.  My doctor gave me some antibiotics , pepcid and steroid inhaler thinking that I might have got some bug and infection during my trip. Over the last 3 months my symptoms did not improve and  last week I got my celiac panel test done . My test result for DEAMIDATED GLIADIN PEPTIDE IGA, QUALITATIVE, EIA  came 4 times more than the average range. I am going to see GI next week and most probably it will be celiac only.  I have started to eliminate gluten in my diet for last 3 days. I felt good for 1st 2 days, but today my symptoms are back again which include bloating and difficulty breathing, Its hard for me to seat as it push the diaphragm and cause difficulty breathing.   I think it will take some weeks before I start to see results from gluten free diet. I had never imagined that all these symptoms could be related to  celiac. I will update the forum once I see GI. 

 

[trents]

Hold on there, Newhike! The blood antibody tests are normally the first stage of testing for celiac disease. The second stage of testing is an endoscopy of the small bowel to check for damage to the small bowel villous lining that is typically caused by celiac disease. Don't start eating gluten free yet as you will likely compromise the results of the biopsy. You don't want that villous lining to start healing yet. Go back on regular amounts of gluten until you talk to your doctor about a referral to a GI doc for the endoscopy/biopsy. The DGP-IGA test is a secondary test for celiac disease and not as specific for celiac disease as is the most commonly ordered test, the tTG-IGA. Were there any other tests ordered besides the DGP-IGA and if so, were any of them positive?

Edited December 5, 2023 by trents

[knitty kitty]

@Newhike,

 Hope you don't mind, but I helped you start your own post.  

Welcome to the forum!

[Wheatwacked]

Welcome Newhike,

I am all to familiar with the tiredness you must be feeling.

  Congratulations on your Celiac panel.  I know it is odd to say, but so many people go years without any answers.  There are over two hundred symptoms that Celiac Disease/ and the malnutrition it causes, that improve on Gluten free diet and replensishment of your depleted vitamin and mineral reserves.  I had nineteen.

Some are directly caused by the autoimmune attack, others the essential nutrient deficiencies caused by villi damage and avoiding foods.

Do you have test results for vitamin D, B12, B6, Homocysteine?

Even while eating gluten, if you pursue a medical diagnosis at this point, you can work to improve your vitamin and mineral intakes.  You'll recover faster with supplements.  

7 hours ago, Newhike said:

numbness in my palms and feet interestingly only during sleeping.

I wake every hour and a half to two and a half hours.  Freezing cold toes.  I recently increased my Thiamine from 500 mg to 2000 mg a day and have had good improvement. I also found that a heating pad by my feet lets me sleep better.  I had a new one with a one hour timer but went back to the old one that stays on all night.

For the bloat, Choline.  Especially if you limit eggs, liver and beef.

Because the Standard American Diet has built in deficiencies most wheat and grain products are fortified.  Gluten free products are not.

          Hiding in Plain Sight: Modern Thiamine Deficiency  "Classically defined thiamine deficiency (TD) disorders in the context of alcoholism and malnutrition are familiar, taught in science and health textbooks from high school onward, and yet, for all of that familiarity, not only are most severe cases of deficiency missed, but the early stages, where symptoms are most easily treated, are entirely disregarded"

          The sometimes forgotten but essential nutrient choline  Because of its wide-ranging roles in metabolism, from cell structure to neurotransmitter synthesis, choline-deficiency is now thought to have an impact on diseases such as liver disease, atherosclerosis and possibly neurological disorders. Therefore, getting adequate choline in the diet is important throughout life for optimal health.

Low vitamin D causes "compromised" immune system  The recommended intake is not sufficient if you are unwell.              

         Surge of information on benefits of vitamin D   Of the first 1,500 patients McCarthy tested, 40% began with vitamin D levels less than 20 ng/mL and 70% less than 35 ng/mL. Only 1% initially had values within his target range.  According to McCarthy, his target range is based upon several factors:

• A lifeguard study that found vitamin D levels in the 70 ng/mL range up to 100 ng/mL (nature’s level) were associated with no adverse effects;
• Data in patients with breast cancer showing a reduction in the incidence of new cancer with postulated 0 point at 80 ng/mL;
• Colon cancer data showing a reduction in the incidence of new cancer (linear) with postulated 0 point at 75 ng/mL;

 

[Newhike]

On 12/4/2023 at 10:28 PM, trents said:

Hold on there, Newhike! The blood antibody tests are normally the first stage of testing for celiac disease. The second stage of testing is an endoscopy of the small bowel to check for damage to the small bowel villous lining that is typically caused by celiac disease. Don't start eating gluten free yet as you will likely compromise the results of the biopsy. You don't want that villous lining to start healing yet. Go back on regular amounts of gluten until you talk to your doctor about a referral to a GI doc for the endoscopy/biopsy. The DGP-IGA test is a secondary test for celiac disease and not as specific for celiac disease as is the most commonly ordered test, the tTG-IGA. Were there any other tests ordered besides the DGP-IGA and if so, were any of them positive?

Trents,

My B12 came on border and for that I am taking monthly shot and daily supplement.  I keep on seeing  WBC COUNT little higher than normal range. I do have Hypothyroidism (for last 6 years ) for which I take medication.

What I am seeing is I have lot of pressure of top of my stomach exactly like I used to feel in my 9th month of pregnancy and thightness in chest which results in difficulty in breathing. Abdominal pain which is all over and not concentrated at a given spot.  From time to time I feel  sudden cramp in different part of my chest (this is mild).  Burping which I feel is sometime just stuck in my airway and it takes time for it to get out. My symptoms are more prevelent in evening time. like 4-10 pm. This is making me more miserable. I have cutdown on my dinner quantity by 40% . Not sure how long will it take to get back to normal.

 

[Scott Adams]

The symptoms you're having can definitely be related to untreated celiac disease, and/or non-celiac gluten sensitivity. Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.

If you can continue your gluten challenge until all testing is completed, at least you might be able to know for sure whether or not you have celiac disease. 

In the end, if a gluten-free diet eliminates most or all of your symptoms, you may end up gluten-free regardless of what your test results indicate.

 

[knitty kitty]

@Newhike,

Thyroid problems are common in Celiac Disease.  There's a genetic overlap.  Nutritional insufficiency (vitamin and mineral deficiencies) found in Celiac Disease can contribute to other autoimmune diseases.  Celiac Disease causes poor absorption of essential vitamins and minerals.  Correction of nutritional insufficiency is very important in order to heal.   

Cobalamine B12 is just one of many vitamins and minerals needed to keep us alive.  Taking just B12 alone is not going to bring your B12 levels up.  B12 needs Thiamine B 1, Riboflavin B2, Folate B9, and Pyridoxine B 6 and minerals like iron and magnesium. 

Insufficiency in Thiamine B 1 can cause gastrointestinal symptoms like you describe.  Worsening of symptoms in the evening could reflect that you're not getting sufficient thiamine from your daily diet.  Heart palpitations, dizziness, difficulty breathing, constipation and peripheral neuropathy are all early symptoms of Thiamine deficiency.  

I had these symptoms before I was diagnosed.  My doctors were not familiar with nutritional deficiency symptoms.  They tend to treat the symptoms with pharmaceuticals without correcting the underlying cause - nutritional deficiencies.  

Hope this helps.

References: 

Celiac Disease and Autoimmune Thyroid Disease: The Two Peas in a Pod

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9312543/

And...

Celiac Disease and the Thyroid: Highlighting the Roles of Vitamin D and Iron

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8224353/

 

[Newhike]

On 12/9/2023 at 2:16 AM, knitty kitty said:

@Newhike,

Thyroid problems are common in Celiac Disease.  There's a genetic overlap.  Nutritional insufficiency (vitamin and mineral deficiencies) found in Celiac Disease can contribute to other autoimmune diseases.  Celiac Disease causes poor absorption of essential vitamins and minerals.  Correction of nutritional insufficiency is very important in order to heal.   

Cobalamine B12 is just one of many vitamins and minerals needed to keep us alive.  Taking just B12 alone is not going to bring your B12 levels up.  B12 needs Thiamine B 1, Riboflavin B2, Folate B9, and Pyridoxine B 6 and minerals like iron and magnesium. 

Insufficiency in Thiamine B 1 can cause gastrointestinal symptoms like you describe.  Worsening of symptoms in the evening could reflect that you're not getting sufficient thiamine from your daily diet.  Heart palpitations, dizziness, difficulty breathing, constipation and peripheral neuropathy are all early symptoms of Thiamine deficiency.  

I had these symptoms before I was diagnosed.  My doctors were not familiar with nutritional deficiency symptoms.  They tend to treat the symptoms with pharmaceuticals without correcting the underlying cause - nutritional deficiencies.  

Hope this helps.

References: 

Celiac Disease and Autoimmune Thyroid Disease: The Two Peas in a Pod

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9312543/

And...

Celiac Disease and the Thyroid: Highlighting the Roles of Vitamin D and Iron

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8224353/

 

Thanks for sharing. I will discuss this with my GI.