Just diagnosed and am having horrible anxiety. Quite scared….

[Tmiles17]

Hi everyone,

 

I am just about 5 days out from a blood test confirmation of celiac disease. I have a follow up with my GI doctor this week but in the meantime am quite scared. I of course made the mistake as a highly anxious person to get on google and am reading about increased mortality rates in the first year after diagnosis (specially for my age group). It’s hard to interpret everything I am finding and am losing sleep every night. I feel out of control and have a sense of impending doom. I have a cousin who was diagnosed 13 years ago and seemingly is doing fine but he was much younger than I am now. There isn’t much reassurance from what I can find. I want to be strong for my family and young son but am scared. After reading around on this sight I feel comfortable opening up. I want to be ready for this major change but feel crippled with worry and anxiety. Thank you for any help, experience and offering anyone can give. 

[Linny H]

Book: Dear Gluten It's Not Me It's You by Jenny Levine Tinkle

She also has a website with a blog and newsletter. 

Wonderful explanation and resource. 

My advice is to seek out an online dietician that has Celiac or specializes in Celiac.

Do your research and take a deep breath. You'll be fine and you are not alone! 

[Wheatwacked]

Welcome to the forum Tmiles17.

There is really nothing to fear.  Many societies had no metabolic disease until they adopted a gluten centric diet.  American Indians didn't have an alcohol problem or rampant diabetes.  Eskimos didn't have heart disease or diabetes until around 1950. Same with Australian Aboriginese and Japanese on their traditional diet are healthier.

Could some of that fear be anger?  It is not uncommon to go through a period of mourning.

Gluten is addictive, it effects our opiod receptors, so some of your anxiety may be withdrawal and that will pass, too.  As the analgesic effects wear off, you may notice "new pains" for a while.  It will pass.

It seems like almost every newly diagnosed Celiac person has low to deficient vitamin D and that will also effect your mood.  A lifeguard in August has a vitamin D blood level around 80 ng/ml.  Normal is anything above 29 ng/ml, just enough to avoid rickets.  Ever seen an anxious, moody lifeguard?  Ever notice you are sadder in winter?

There is no shame in taking vitamin and minerals to replenish your low levels.  They are not drugs to correct a problem, nor a supplement to enhance performance; they are the tools and raw materials we need to eat every day to live.  At that, those RDAs listed on the labels are the minimum to keep 98% of the healthy people from a particular disease state.  Healthy levels are many times that.

Choline (liver, eggs, red meat) has an RDA at ~500 mg a day. 90% don't eat that much.

Eggs are one of the best sources of choline, with 1 egg providing 147 mg. This means that eating just 2 eggs per day covers 54% of the Recommended Daily Intake (RDI) 

How's that for a kick in the head?  We've been told for 60 years to avoid eating eggs.  No more than one or two a week.  Or 5 cups of cooked brocolli a day will give you the same amount.  Choline is most of the mitochondria membrane, all acetylcholine, most of bile.  In just that one deficient vitamin you can have poor energy, brain fog, and stinky poop.

98% of intracellular salts is potassium.  The blood tests only measure the 2% found in the blood. The Daily Value is 4.7 grams a day. Almost a teaspoon worth of elemental potassium.

Celiac Disease is a disease of malabsorption, untreated it can go from subclinical to abject malnutrition in a short time.  Less than a week in the case of Thiamine, vitamin B1.  And in the west, most doctors believe it is only a problem for alcoholics, so we get sicker.

Wheat, barley and rye are not the staff of life we've been led to believe.

Just a suggestion, get the whole family on board as gluten free. Strength in numbers and they'll thank you later.

 

[trents]

8 hours ago, Tmiles17 said:

Hi everyone,

 

I am just about 5 days out from a blood test confirmation of celiac disease. I have a follow up with my GI doctor this week but in the meantime am quite scared. I of course made the mistake as a highly anxious person to get on google and am reading about increased mortality rates in the first year after diagnosis (specially for my age group). It’s hard to interpret everything I am finding and am losing sleep every night. I feel out of control and have a sense of impending doom. I have a cousin who was diagnosed 13 years ago and seemingly is doing fine but he was much younger than I am now. There isn’t much reassurance from what I can find. I want to be strong for my family and young son but am scared. After reading around on this sight I feel comfortable opening up. I want to be ready for this major change but feel crippled with worry and anxiety. Thank you for any help, experience and offering anyone can give. 

May I ask what is your age? Until I read that you have a young son I assumed you were elderly after reading your statement about  . . . increased mortality rates in the first year after diagnosis (especially for my age group) . . .

Where did you read that stat? I've been a regular participant on this forum for many years and have never seen that stat. Are you aware of any serious health issues that have spun off from your celiac disease would cause you to doubt that you might no live long?

And did your GI doc talk to you about wanting to do an endoscopy with biopsy? Normally, that is done following positive blood work as confirmation. Unless blood antibody test scores are extremely high, the typical diagnosis path is bloodwork followed by an endoscopy with biopsy. If you will be having this done, you should not start a gluten free diet yet as it would compromise the results from the biopsy. The reason is it would allow healing of the small bowel villous lining.

[trents]

Actually, from what I've read, mortality rates among celiacs is not much different if any at all from the general population. The biggest threat to mortality is probably an increased rate of small bowel cancer in the celiac population which is 4x what it is in the general population. But it's still pretty rare, even in the celiac population. You have to be careful when reading statistics and make sure you understand what they are really saying and not lose track of the bigger picture. As a made up example, 8 x .08 risk is still less than 1%.

[trents]

Most medical problems that spin off from celiac disease are related to vitamin and mineral deficiencies from malabsorption. The damage done to the small bowel villous lining can make absorption much less efficient. It wouldn't surprise me if your high anxiety level actually has a nutritional deficiency base.

[yuluyouyue]

I can guarantee that this shall pass. I felt exactly the same for the first 3 to 6 months or so. Total gloom and doom and fear of all sorts of diseases. Now it has been 3 years and I hardly think about those things. It just became normal that I have celiac and I believe I am now as healthy as the next peŕson in my age group, which is mid 40ies. Actually, you can do a lot to ensure this. Exercise, eat healthy, sleep well and don't stress too much. If even with all that something goes wrong, well thats just bad luck and no need to worry about what you cant control. Anyway I am sure most of celiacs will tell you that this initial feeling passes and you are back again to living a normal life soon enoguh. Hang in there. 

[knitty kitty]

@Tmiles17, welcome to the forum!

Celiac Disease is a disease that causes malabsorption which in turn leads to malnutrition.  Our small intestine (where essential vitamins and minerals are absorbed) gets damaged.  Since these nutrients are necessary to heal, supplementing with vitamins and minerals can help us heal faster and stay healthy.  

Anxiety symptoms are seen with nutritional deficiencies.  When I was deficient, I had that terrible impending doom feeling.  I found high dose Thiamine (500 mg or more) very helpful in relieving anxiety.  Here's an article I found very helpful....

The Role of Vitamins and Minerals in Psychiatry

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3046018/

[Wheatwacked]

yuluyouyue,  I remember how desperate you were.  I am so glad.

[Guest Neerajkirola]

On 7/23/2023 at 11:24 AM, Tmiles17 said:

Hi everyone,

 

I am just about 5 days out from a blood test confirmation of celiac disease. I have a follow up with my GI doctor this week but in the meantime am quite scared. I of course made the mistake as a highly anxious person to get on google and am reading about increased mortality rates in the first year after diagnosis (specially for my age group). It’s hard to interpret everything I am finding and am losing sleep every night. I feel out of control and have a sense of impending doom. I have a cousin who was diagnosed 13 years ago and seemingly is doing fine but he was much younger than I am now. There isn’t much reassurance from what I can find. I want to be strong for my family and young son but am scared. After reading around on this sight I feel comfortable opening up. I want to be ready for this major change but feel crippled with worry and anxiety. Thank you for any help, experience and offering anyone can give. 

I'm sorry to hear about your anxiety and worries. It's natural to feel overwhelmed after a diagnosis, but try not to jump to conclusions based on internet searches. Focus on the positive aspects of managing celiac disease and the potential improvements to your health with a gluten-free lifestyle. Your follow-up appointment with your GI doctor will provide valuable information and guidance.

Remember that many people with celiac disease lead healthy lives once they adapt to the necessary changes. Reach out for support from your family, friends, and celiac support groups to help you through this journey. Take it one step at a time and be patient with yourself as you adjust to the new way of living.

Thanks

[cristiana]

17 hours ago, knitty kitty said:

Anxiety symptoms are seen with nutritional deficiencies.  When I was deficient, I had that terrible impending doom feeling. 

Impending doom - that was me, too, in 2012, came straight out of the blue, couldn't understand why.  Six month later my gastric symptoms started which led to my diagnosis.

I found B12 supplements super helpful.

Two books - At Last a LIfe by Paul David and The Six Step Depression Cure by Dr Steve Llardi were really helpful reads.

Also meeting or hearing about other coeliacs in their 80s and 90s and still going strong was a great encouragement.

 

😊