I was diagnosed celiac about 3 months ago but being gluten free has not helped and i think i’m going crazy

[Marina F]

3 months ago I was diagnosed celiac. I have been so careful to avoid any cross contamination and even started working in a celiac restaurant. It’s made me really isolated actually. I’ve been getting really scary symptoms that feel like seizure-like headaches and pain in the left side of my chest, continuous weight gain around my middle, thrush, flushing red and hot in the face all the time, nausea, exhaustion and highly emotional. My bowel movements have been normal but I never did have crippling Diarrhoea. I keep thinking that I might not be celiac because I feel like my whole world is falling apart.

My doctor put me on ferrous fumarate iron supplements which made me feel unwell and then I was told to stop taking them. My doctor keeps telling me everything is “anxiety” which feels like gaslighting. I know I’m unwell and I can’t fit any of my clothes or really go into work anymore.

I keep crazily googling my symptoms wondering if I have a parasite or a gut infection or thyroid problems or SOMETHING. But the doctor doesn’t take me seriously because I’m 23 and they think that now im gluten-free they can just leave me to it.

Does anyone have any advice? I feel so alone with this. 

[Shelley Pond Rogers]

1 hour ago, Marina F said:

3 months ago I was diagnosed celiac. I have been so careful to avoid any cross contamination and even started working in a celiac restaurant. It’s made me really isolated actually. I’ve been getting really scary symptoms that feel like seizure-like headaches and pain in the left side of my chest, continuous weight gain around my middle, thrush, flushing red and hot in the face all the time, nausea, exhaustion and highly emotional. My bowel movements have been normal but I never did have crippling Diarrhoea. I keep thinking that I might not be celiac because I feel like my whole world is falling apart.

My doctor put me on ferrous fumarate iron supplements which made me feel unwell and then I was told to stop taking them. My doctor keeps telling me everything is “anxiety” which feels like gaslighting. I know I’m unwell and I can’t fit any of my clothes or really go into work anymore.

I keep crazily googling my symptoms wondering if I have a parasite or a gut infection or thyroid problems or SOMETHING. But the doctor doesn’t take me seriously because I’m 23 and they think that now im gluten-free they can just leave me to it.

Does anyone have any advice? I feel so alone with this. 

Hi. I'm sorry you are feeling unwell. I think if you stick to a few basics until your gut heals (where your anxiety comes from) normal to be scared to eat etc. Gluten free toast, bananas and mashed potatoes is easier digested.  Often lactose intolerance goes along with gluten intolerance.  You could try a few things.  It seems I can handle a little aged cheese as the lactose goes out with the whey in the making process.  I can't handle much sugar either and most gluten free things are filled with it. Try to eat some good clean natural gluten and lactose free items. Hoping you feel better soon. It takes time. Exercise like walking helps anxiety. Cut back on caffeine. Not a professional opinion but just hoping to help shed some light and get you feeling better. Sending my best regards💜

[trents]

Welcome to the forum, Marina!

It is possible you were misdiagnosed but it is also possible you have something else going on in addition to celiac disease. But first things first. Can you share more information about how you were diagnosed with celiac disease? What tests were run and do you have the test numbers? I am assuming you had blood antibody testing done. Do you have the numbers, including the reference rages for what is negative?

[Marina F]

3 hours ago, Shelley Pond Rogers said:

Hi. I'm sorry you are feeling unwell. I think if you stick to a few basics until your gut heals (where your anxiety comes from) normal to be scared to eat etc. Gluten free toast, bananas and mashed potatoes is easier digested.  Often lactose intolerance goes along with gluten intolerance.  You could try a few things.  It seems I can handle a little aged cheese as the lactose goes out with the whey in the making process.  I can't handle much sugar either and most gluten free things are filled with it. Try to eat some good clean natural gluten and lactose free items. Hoping you feel better soon. It takes time. Exercise like walking helps anxiety. Cut back on caffeine. Not a professional opinion but just hoping to help shed some light and get you feeling better. Sending my best regards💜

Thank you for the reply, I am dealing with with a difficult relationships with food already so it’s hard for me to limit myself regarding certain food groups because the restriction triggers my unhealthy relationship with food. 
 

but thank you for your advice! 😊

[Marina F]

6 minutes ago, trents said:

Welcome to the forum, Marina!

It is possible you were misdiagnosed but it is also possible you have something else going on in addition to celiac disease. But first things first. Can you share more information about how you were diagnosed with celiac disease? What tests were run and do you have the test numbers? I am assuming you had blood antibody testing done. Do you have the numbers, including the reference rages for what is negative?

Thank you.

ive have blood tests over the past 3 years confirming gluten sensitivity and intolerance. I finally got an gastroscopy and biopsies a few months ago. The only information I can find on my report letters is that my Stomach came back “normal” and my Duodenum came back “Celiac Disease.” I think I did have antibody blood tests as well. I have read about things that mimic celiac disease so I’m starting to feel that they’ve missed something important. Ever since the gastroscopy I’ve been struggling with strange symptoms and I’ve been told it could be acid reflux and heart burn and “anxiety”. But the pain is not matching with these answers and I’m getting worse. I’m 23 and an athlete but despite how active I am my body is storing an immense amount of fat around my middle and on top of all my painful symptoms my energy is so so low that I can hardly continue working. 
 

 

[shadycharacter]

If you were iron deficient (as you were prescribed iron supplements) perhaps you have other nutritional deficiencies as well. Which nutrients have been checked? Gluten intolerance can lead to malapbsorption so eating well may not be enough. 

[trents]

41 minutes ago, Marina F said:

Thank you.

ive have blood tests over the past 3 years confirming gluten sensitivity and intolerance. I finally got an gastroscopy and biopsies a few months ago. The only information I can find on my report letters is that my Stomach came back “normal” and my Duodenum came back “Celiac Disease.” I think I did have antibody blood tests as well. I have read about things that mimic celiac disease so I’m starting to feel that they’ve missed something important. Ever since the gastroscopy I’ve been struggling with strange symptoms and I’ve been told it could be acid reflux and heart burn and “anxiety”. But the pain is not matching with these answers and I’m getting worse. I’m 23 and an athlete but despite how active I am my body is storing an immense amount of fat around my middle and on top of all my painful symptoms my energy is so so low that I can hardly continue working. 
 

 

There are only a few things that can cause villi blunting in the duodenum, celiac disease being the most common:

Have you been tested for H. Pylori and for SIBO? These additional maladies are not uncommon among the celiac population. How are your liver enzymes (ALT, AST, Bilirubin)?

[knitty kitty]

@Marina F,

Welcome to the forum!  So sorry you're not feeling well.  

I have had to deal with vitamin and mineral deficiencies caused Celiac Disease.  Celiac damages the small intestine (duodenum) making absorption of vitamins and minerals difficult.

Changing from a gluten containing diet to a gluten free diet can cause nutritional deficiencies.  Products made with gluten (wheat, barley and rye) are required to have vitamins added to them to replace those lost in processing.  Gluten-free facsimile foods are not required to be enriched with vitamins.  

Our bodies need the eight essential B vitamins every day.  These B vitamins need each other to function properly.  They are used in every cell of our bodies.  They are water soluble and can be lost or used up quickly when we are ill, under emotional stress and physical stress (like being an athlete). 

I had deficiencies in the B vitamins.  Thiamine deficiency caused weight gain in my abdomen.  Thiamine B1 is needed to convert carbohydrates, fats and proteins into energy for our bodies.  When thiamine is low, more fat is stored in the abdomen.  Thiamine is instrumental in keeping bacteria and yeasts in our digestive tract under control.  Without sufficient thiamine, I developed SIBO (small intestinal bacterial overgrowth) and thrush (Candida overgrowth).  Supplementing with high dose Thiamine (300-1500 mg/day) provided my body with the thiamine it needed to get these microorganisms under control.  Thiamine supplementation along with magnesium citrate relieved my fatigue and my anxiety lessened.  

Cobalamine B12 supplementation also helped alleviate my fatigue and hot flashes.  Riboflavin B2 helped with my headaches.  Niacin B3 helped with skin rashes and energy levels.  Pyridoxine B6 and folate B9 with B12 and iron helped my anemia.  Biotin B7 helped my hair grow back.  Vitamin D helped my depression.

Because they all work together, it's important to supplement them all together, so I took a B Complex supplement in addition to the high dose Thiamine, magnesium and iron. 

Do discuss with your doctor the benefits of supplementing with vitamins and minerals while your intestines are healing.  Checking for nutritional deficiencies is part of proper follow up care for Celiac patients.  

Blood tests for deficiencies are not an accurate measurement of deficiencies within the tissues (muscles, brain, heart, etc.).  Blood tests will give false results if you are taking vitamin supplements at the time of testing.

I'm not a doctor.  I'm a microbiologist that has had serious problems with vitamin deficiencies.  (Read my blog for more information.)  I know how you feel.  My concerns were brushed aside by several doctors who did not recognize the deficiency symptoms.  

I also followed the Autoimmune Protocol Diet which promotes intestinal healing.

Be encouraged!  

 

[Wheatwacked]

7 hours ago, Marina F said:

I keep crazily googling my symptoms wondering if I have a parasite or a gut infection or thyroid problems or SOMETHING.

You are suffering from malnutrition. Try googling a symptom and vitamin deficiency. For example:  Thrush and choline. You will find references to vitamin D, B12, folate, iodine, choline. 95% of our cell membranes is phosphatidyl Choline. In one study they found that eating two eggs instead of a bagel at breakfast caused weight loss.

Thrush and nausea: Choline is rarely thought about, but it works as an antifungal. It is estimated that in the US, UK and Australia only 10% eat the recommended amount.

Energy, neuropathy, headaches: Thiamine vitamin B1deficiency. A quick way to tell is to supplement B1 at between 300 mg to 2000 mg a day. "Patients weighing < 60 kg → Take 10 mg of B1 per kg of your weight, per day" The Missing Link to Thyroid Fatigue. Low iodine intake will often lead doctors to prescribe Thyroxine, when the problem is just not enough iodine in the diet. One to three sheets of Nori a day.

highly emotional: Vitamin D deficiency. A healthy lifeguard in October has 80 ng/ml vitamin D. Most Celiac, depression and other autoimmune patients have low D, around 30 ng/ml. To break my depression, it took 10,000 IU a day, less than that had no noticeable effect. It began to work 4 days after I increased from 7000 IU to 10,000.. After 4 years I reached 47 ng/ml. After 8 years my D plasma is holding steady at 80 and my doctors says to continue. Especially in the northern hemisphere, 

 

 

Quote

 

"10% of the people developed fatty liver, muscle damage, or both when they consumed the Adequate Intake (AI) of choline and reversed the damage when they consumed a high-choline diet. (2)...

The great news is that a 2010 study found that choline therapy modulates immune inflammation and suppresses oxidative stress in asthma patients. Researchers assessed the effects of choline supplements (1500 mg twice) for 6 months on immune inflammation and were evaluated by clinical, immunologic and biochemical parameters.

The treatment with choline showed a significant reduction in symptom/drug score and improvement(3)

 

 

 

[dani nero]

Hi Marina, 

When I went gluten free, my body took 6 months to detox. Horrible 6 months. I was weak, sluggish, had awful tummy pains, rashes and my mental health was poo. You might still be detoxing as well. Not sure if the period varies  from person to person.

As for your anxiety, your intestines are adjusting to your new diet and take time to adapt. Some intestinal nerves are directly hooked to the brain, meaning your brain takes a dip whenever your intestines struggle for any reason.

I learned early on from the people here that taking probiotics is imperative. You can't go without them. I can't recommend mine since I dont live in the us, but I'm sure you'll get plenty of recommendations here. You have no idea how much you need them to help your gut heal.

 

I'm sorry you feel isolated,  but from personal experience (thought might not apply to you), feelings of isolation intensify with an anxious state of mind. When your anxiety passes, you'll come out a stronger person, and you'll feel that solving your isolation situation will be a a small feat, easy, instead of being a wall.  You'll conquer the world when you're better ❤ In the meantime, feel free to vent. People here understand your hardships and relate to you.

The anxiety and panic you're feeling are a temporary uncomfortable experience but they will pass. Just remember that you feel this way because your body is going through some health difficulties. The world is not falling apart, you just feel it is.

As for your thyroid, I think many celiacs can have thyroid problems so it's a possibility. Just like intestines, thyroid health is  directly responsible for anxiety and sluggishness. Get it checked, but even if your thyroid is ok, doesn't mean it can't dip from time to time. I've done several thyroid tests throughout the 10 years I've been gluten free, and sometimes they come back normal, sometimes low. That isn't a cause for concern and won't need any medication but just keep in mind that a thyroid dip might make you anxious and sluggish sometimes.

Hope I didn't forget anything, and that you will get well soon ❤

[Marina F]

On 5/17/2022 at 7:19 PM, knitty kitty said:

@Marina F,

Welcome to the forum!  So sorry you're not feeling well.  

I have had to deal with vitamin and mineral deficiencies caused Celiac Disease.  Celiac damages the small intestine (duodenum) making absorption of vitamins and minerals difficult.

Changing from a gluten containing diet to a gluten free diet can cause nutritional deficiencies.  Products made with gluten (wheat, barley and rye) are required to have vitamins added to them to replace those lost in processing.  Gluten-free facsimile foods are not required to be enriched with vitamins.  

Our bodies need the eight essential B vitamins every day.  These B vitamins need each other to function properly.  They are used in every cell of our bodies.  They are water soluble and can be lost or used up quickly when we are ill, under emotional stress and physical stress (like being an athlete). 

I had deficiencies in the B vitamins.  Thiamine deficiency caused weight gain in my abdomen.  Thiamine B1 is needed to convert carbohydrates, fats and proteins into energy for our bodies.  When thiamine is low, more fat is stored in the abdomen.  Thiamine is instrumental in keeping bacteria and yeasts in our digestive tract under control.  Without sufficient thiamine, I developed SIBO (small intestinal bacterial overgrowth) and thrush (Candida overgrowth).  Supplementing with high dose Thiamine (300-1500 mg/day) provided my body with the thiamine it needed to get these microorganisms under control.  Thiamine supplementation along with magnesium citrate relieved my fatigue and my anxiety lessened.  

Cobalamine B12 supplementation also helped alleviate my fatigue and hot flashes.  Riboflavin B2 helped with my headaches.  Niacin B3 helped with skin rashes and energy levels.  Pyridoxine B6 and folate B9 with B12 and iron helped my anemia.  Biotin B7 helped my hair grow back.  Vitamin D helped my depression.

Because they all work together, it's important to supplement them all together, so I took a B Complex supplement in addition to the high dose Thiamine, magnesium and iron. 

Do discuss with your doctor the benefits of supplementing with vitamins and minerals while your intestines are healing.  Checking for nutritional deficiencies is part of proper follow up care for Celiac patients.  

Blood tests for deficiencies are not an accurate measurement of deficiencies within the tissues (muscles, brain, heart, etc.).  Blood tests will give false results if you are taking vitamin supplements at the time of testing.

I'm not a doctor.  I'm a microbiologist that has had serious problems with vitamin deficiencies.  (Read my blog for more information.)  I know how you feel.  My concerns were brushed aside by several doctors who did not recognize the deficiency symptoms.  

I also followed the Autoimmune Protocol Diet which promotes intestinal healing.

Be encouraged!  

 

Thank you so much for all of this wonderful information, it’s so satisfying to have somebody who understands and takes me seriously. But it’s even better to have someone who can give me solid answers and not just tell me to destress. Thank you again!Thank you so much for all of this wonderful information, it’s so satisfying to have somebody who understands and takes me seriously. But it’s even better to have someone who can give me solid answers and not just tell me to destress. Thank you again!

[Marina F]

On 5/17/2022 at 3:50 PM, trents said:

There are only a few things that can cause villi blunting in the duodenum, celiac disease being the most common:

Have you been tested for H. Pylori and for SIBO? These additional maladies are not uncommon among the celiac population. How are your liver enzymes (ALT, AST, Bilirubin)?

I actually haven’t been tested for these other things, that article you attached is really interesting and actually I have symptoms much more like SIBO and bacterial. With the doctor system here it’s so hard to get past just your local practitioner, I am going to try and see a Gastro specialist who understands coeliac at the very least.And I will ask him about these things and for these tests.

Thank you so much for this!

[Kate333]

Hi Marina.  Sorry you are struggling but you are not alone in your response to the diagnosis and ongoing issues. 

When a doctor mentions the anxiety issue, I wouldn't be so quick to get angry or conclude that you are being "gaslighted".  And you note that you are a highly emotional person.  Nothing wrong with that.  Same here.  Perhaps you are not fully aware how dramatically chronic anxiety/depression/insomnia can often affect one's PHYSICAL health, including presenting with the symptoms you describe.  I certainly was unaware of that mind-body link until after my celiac disease diagnosis in late 2019.  A wonderful website (anxietycentre.com) has a ton of articles on the mind-body connection and helpful advice for coping with chronic, severe stress (perfectly understandable, esp. in this seemingly endless pandemic).   You might also benefit from a low-dose anti-anxiety/depressant medication and counseling, even short term.  So important to address both physical and mental health healing after celiac disease diagnosis.     

It sounds like you doing a great job working on learning how to avoid gluten.  It does take practice to get the hang of the strict gluten-free diet required to facilitate healing your gut which takes time, so good idea to give yourself some grace and patience.  Make sure you ask your doc for a follow-up TTG/IGA blood test and biopsy to track your healing progress.  You might also get a blood test to assess your vitamin/mineral levels and whether (or not) you need any additional supplements.  

One more piece of friendly advice:   try and limit your time online.  I know how tempting it is to jump on "Dr. Google" to search symptoms and possible diagnoses.   But IMO it is just an anxiety-fueling, time-wasting, rabbit-hole which will only intensify your anxiety and erode your physical healing and mental peace of mind.

Best of luck!

[shadycharacter]

On 5/17/2022 at 4:02 PM, Marina F said:

Thank you.

ive have blood tests over the past 3 years confirming gluten sensitivity and intolerance. I finally got an gastroscopy and biopsies a few months ago. The only information I can find on my report letters is that my Stomach came back “normal” and my Duodenum came back “Celiac Disease.” I think I did have antibody blood tests as well. I have read about things that mimic celiac disease so I’m starting to feel that they’ve missed something important. Ever since the gastroscopy I’ve been struggling with strange symptoms and I’ve been told it could be acid reflux and heart burn and “anxiety”. But the pain is not matching with these answers and I’m getting worse. I’m 23 and an athlete but despite how active I am my body is storing an immense amount of fat around my middle and on top of all my painful symptoms my energy is so so low that I can hardly continue working. 
 

 

What kind of carbs do you eat? Many gluten free alternatives seem to be made with quite a lot of pure starch (corn starch, rice starch, even wheat starch sometimes) as opposed to whole grains. I've been wondering what that means from a GI (glycemic index) point of view. 

[HeidiSmith123]

So sorry you have been dealing with this. It can be overwhelming for sure.  I was diagnosed in 2000 and had so many things going on and could not figure out why I was not getting better.

There may be some underlying reason and it may be beneficial to consult with a coach to help you uncover what is going on. If you can find someone in your area to speak with it could really help. Also, finding a functional medicine doc is sometimes helpful as they will tend to dig deeper than traditional doctors with Celiac and other conditions which has been my experience.  
 

Try not to give up or get to discouraged. You can get to the bottom of it with patience and some investigation.  Good health is achievable!!

[Beverley Ann Johnson]

On 5/17/2022 at 10:02 AM, Marina F said:

Thank you.

ive have blood tests over the past 3 years confirming gluten sensitivity and intolerance. I finally got an gastroscopy and biopsies a few months ago. The only information I can find on my report letters is that my Stomach came back “normal” and my Duodenum came back “Celiac Disease.” I think I did have antibody blood tests as well. I have read about things that mimic celiac disease so I’m starting to feel that they’ve missed something important. Ever since the gastroscopy I’ve been struggling with strange symptoms and I’ve been told it could be acid reflux and heart burn and “anxiety”. But the pain is not matching with these answers and I’m getting worse. I’m 23 and an athlete but despite how active I am my body is storing an immense amount of fat around my middle and on top of all my painful symptoms my energy is so so low that I can hardly continue working. 
 

 

IBS symptoms are similar to celiac.  It is possible you may have IBS.