fatigue 2 months post gluten free and feeling sicker than ever

[KierstenL]

Hello!

I would like to preface this by saying I’m experiencing a lot of brain fog and gluten ataxia while writing this so I really apologize if this post seems disorganized. Also I’m a 24 year old woman to give this post some context.

For a very long time now I’ve always had very very bad digestive issues that have only gotten worse over time. I was diagnosed with POTS when I was 14 and my doctor always told me my gut problems are from my pots. I also was diagnosed with Ankylosing Spondylitis at age 22. But I looked into celiac and have read so many articles and a few books about it and I realized I had so many symptoms in common with celiac. So I decided to cut gluten out of my diet and a week later my entire life changed. I didn’t have any digestive problems at all, my brain fog was cleared, I no longer felt uncoordinated, my arthritis was so much better, and all my pots symptoms vanished. It was incredible. But about a month and a half later I started feeling symptoms I’ve never felt before. I constantly felt nauseous and hungry at the same time, my head is constantly hurting, my digestive issues are worse than they’ve ever been, I’m constantly fatigued, my arthritis is so bad and crippling, my anxiety and depression are back and I have panic attacks every night and really struggle falling asleep. It’s complete and utter hell. I share a kitchen with my family and I do everything in my capacity to make sure my food doesn’t get cross contaminated. I’ve completely cut out dairy recently but it doesn’t seem to make a big difference. I can no longer function especially with my gluten ataxia and brain fog. Is this normal for symptoms to reappear in the healing process? I do everything in my power to make sure I don’t get anything cross contaminated and double triple check ingredients lists to make sure it doesn’t contain gluten or is processed in any facility with gluten. I don’t even eat at restaurants and cook everything at home. I’ve also checked medications, skincare products, and vitamins and supplements to make sure I’m not getting gluten from that.

[trents]

Welcome to the forum, @KierstenL!

For clarity's sake, you are a self-diagnosed celiac who has not been formally diagnosed, correct?

Are you still eating oats, even gluten-free oats? Dairy and oats cause the same reactions as gluten in about 10% of the celiac population. Their main proteins are very similar in structure to gluten.

Are you taking any vitamin and mineral supplements? When you go gluten free you automatically eliminate a major source of vitamins as wheat flour is fortified. Gluten free flours are not. Those who have suffered with long-term undiagnosed celiac disease will invariable have vitamin and mineral deficiencies because of the damage done to the villous lining of the small bowel. This is the area of the intestinal track where all of the nutrients from the food we eat are absorbed. The inflammation caused by celiac disease wears down the millions of finger-like projectiles that make up this lining and render it very inefficient in absorbing nutrients.

Hence, we commonly recommend that newly diagnosed celiacs begin taking high potency vitamin and mineral supplements: B12, B-complex, 5-10,000 IU of D3 daily, magnesium glycinate or magnesium citrate (not magnesium oxide), and zinc. Make sure all are gluten free. Costco is a good source for good quality, gluten free vitamins and supplements that are gluten free. 

[Wheatwacked]

@KierstenL,

trents is compltetely right.

Welcome to the 1% Club (Celiac Disease) or at least the 10% Club (Non Celiac Gluten Sensitivity).  

An official diagnosis may have medical or legal advantages, but sounds like you need relief.  Later you can do a gluten challenge for a diagnosis.  

7 hours ago, KierstenL said:

I constantly felt nauseous and hungry at the same time, my head is constantly hurting, my digestive issues are worse than they’ve ever been, I’m constantly fatigued, my arthritis is so bad and crippling, my anxiety and depression are back and I have panic attacks every night and really struggle falling asleep.

There are several in particular that might help.  Of course best is getting these nutrients in your food, but if you can't they are available compressed into pill form.  They really shouldn't be call supplements as they are essential nutrients.  They are concntrated minerals and vitamins that our bodies need, like tools in a factory.  And they are cheap.  'Dose for Your Liver' is a supplement. Vitamin D is not.  Consider it Fortification because many believe that supplements are a scam. Some are.

Get your 25(OH)D Serum Level checked if you can.  Many newly diagnosed Celiacs have extremely deficient vitamin D.  If you can't get it tested start fortifing your vitamin D.  For me it took 10,000 IU a day for it to help my depression.  After a few days it was like "Here comes the sun".  9 years later I still need to take it or I start to withdraw.  For months I've maintained over 90 ng/ml.  I stopped taking it, thinking that 3 hours of midday sun ( UV 10+) a week in bathing trunks without sunscreen  I would be fine.  From early April to July 13 I did not take vitamin D.  My 25(OH)D Serum Level dropped from 93 to 55 ng/ml.  That 600 IU they say is sufficient is based on preventing Rickets only.  Vitamin D is an essential part of our bone health, but also mental and immune health.

For your nausea and hungry at the same time start fortifying with Thiamine (B1) and Choline.

Choline Deficiency can affect brain fog, energy, fat digestion.  Choline salts liquify the bile.    Before that is causes slow digestion of fats, giving the bad bacteria that has taken over your gut time to create gasses that bloat, abdominal pain that lasts several hours, nausea, vomiting, and loss of appetite. Even a fever and chills.  Since our nutritient experts started promoting limited eggs, beef and liver we no longer eat sufficent choline.  The NIH safe range is 500 to 3500 mg a day.  That is 4 eggs or 10 cups of cooked brocolli a day.  A good target would be 1000 mg a day, either food or Choline or Phosphatidyl caps.  Choline Deficiency has been shown to cause. Non Alcoholic Fatty Liver Disease.  Of course choline deficiency causes Alcoholic Fatty Liver, but the doctors believe they are separate diseases.  It was once believed that only alcoholics got liver disease.

All of your symptoms could also be Thiamine Deficiency.  It can cause Gastrointestinal Beriberi, or Wernikes Encephalitis.  That is the more likely cause of your "gluten ataxia".   Lots of Thiamine (250 mg+ a day). There are bloods tests, but by the time your convince a doctor and get the results,  if it is thiamine deficiency, you will already feel better.  Thiamine deficiency is also the cause of High Calorie Malnutrition.

Quote

Thiamine deficiency contributes to a number of conditions spanning from mild neurological and psychiatric symptoms (confusion, reduced memory, and sleep disturbances) to severe encephalopathy, ataxia, congestive heart failure, muscle atrophy, and even death.  Neurological, Psychiatric, and Biochemical Aspects of Thiamine Deficiency in Children and Adults

So in addition to trents suggestion, add in 10,000 IU Vitamin D3, 500 mg B1 or Benfothiamine, and 1800 mg Phosphatidyl Choline every day. 

You may feel improvement as soon as a day or so and it will keep getting better.

POTS can be caused by your potassium/salt ration.  Even the dreaded potato chip is good for you. 28 grams, one ounce, of Lays Classic has 350 mg potassium to 140 mg of sodium. That is 2.5:1.  Good for blood pressur.  The Choline will help if you have a problem with the 10 grams of fat.  The DV for potassium is 4700 mg  a day for everyone.  Most Americans only get less than 3000 mg.  This ratio is the basis for the DASH diet, but increasing potassium intake is better in my opinion than restricting the other nutrients you get with potassium containing foods.

If you want to fix lactose intolerance eat fermented foods like Dill pickles, salt fermented, No vinegar.  It will repopulate your gut with beneficial Lactobaccillus, a beneficial bacteria. Lactobaccillus excretes lactase in exchange for room and board.

Naturally Fermented Pickles [The Complete Guide]

Edited August 3 by Wheatwacked

[Mari]

Hi KierstenL,

You have received loads of advice and information but while you are thinking about that I want to make a few comments about what you could do right now. I am so sorry that you thought you had a cure for your medical problems then they came roaring back. 

Since you been only gluten-free for less than 2 months ask your health care provider to order a blood test, a Celiac Panel which, among other tests, will show whether the autoantibodies to gluten are elevated or in the normal range. In some or many people these antibodies will still be elevated up to 2 years after going gluten-free. Do not take the time to do the gluten challenge but you may but may need to reassure your provider that you would be willing to do that in the future before you did the endoscopy to confirm damage to your small intestine villi. So if your autoantibodies are in the normal range you can do a few more things yourself.

 

Many people have taken DNA tests for genetic genealogy. If you have the results just download your raw data file then upload it to Promethease.com. I think that costs about $15. If you have not done this DNA test you can order one online and have your results in about 3 weeks. Search the results for Celiac and see what shows up. I did this for a niece and it showed that she had inherited a predisposition to develop Celiac Disease. I uploaded her raw data file from Ancestry(dot)com. 

Another useful source of information is enterolab.com. They have an FDA approved laboratory and can order tests drawn at any medical laboratory. I used this lab to have blood drawn at a local medical lab. I paid about $200  to do a DNA test for my DQ  varieties and it showed that I had inherited a DQ8 from one parent and a DQ6 from the other parent. DQ8 is a main celiac gene, the DQ6 can make the problems or symptoms worse. This test may not be as expensive. This was about 18 years ago the there are other labs that your Dr. could order from.

my reply is getting rather long but one more suggestion. Start an elimination diet as soon as possible. Reactions to various foods affect many people, not only people with celiac disease.

Take care,

Marian

 

 

 

[knitty kitty]

@KierstenL,

Your symptoms sound similar to mine when I started gluten free.  

Celiac Disease causes malabsorption.  You're not absorbing sufficient nutrients, vitamins and minerals.  

Vitamin B1, thiamin, runs out first because it cannot be stored for longer than three weeks, and we need so much of it, especially when we're sick, emotionally stressed, and physically active, especially in hot weather.  

Thiamine deficiency can cause gastrointestinal symptoms, brain fog, anxiety, depression, and panic attacks, and also contribute to POTS.

There's eight B vitamins. They should be taken together, but extra thiamin is required to correct a thiamin deficiency.  Benfotiamine (a form of Thiamine that promotes intestinal healing), a B Complex, Vitamin D and magnesium are very beneficial.  

Have you talked to your doctor or nutritionist about supplementing with vitamins and minerals while healing? 

Further Reading:

Thiamine deficiency disorders: a clinical perspective

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8451766/

And...

https://hormonesmatter.com/thiamine-deficiency-causes-problems/

[GardeningForHealth]

On 8/2/2024 at 1:48 PM, KierstenL said:

Hello!

I would like to preface this by saying I’m experiencing a lot of brain fog and gluten ataxia while writing this so I really apologize if this post seems disorganized. Also I’m a 24 year old woman to give this post some context.

For a very long time now I’ve always had very very bad digestive issues that have only gotten worse over time. I was diagnosed with POTS when I was 14 and my doctor always told me my gut problems are from my pots. I also was diagnosed with Ankylosing Spondylitis at age 22. But I looked into celiac and have read so many articles and a few books about it and I realized I had so many symptoms in common with celiac. So I decided to cut gluten out of my diet and a week later my entire life changed. I didn’t have any digestive problems at all, my brain fog was cleared, I no longer felt uncoordinated, my arthritis was so much better, and all my pots symptoms vanished. It was incredible. But about a month and a half later I started feeling symptoms I’ve never felt before. I constantly felt nauseous and hungry at the same time, my head is constantly hurting, my digestive issues are worse than they’ve ever been, I’m constantly fatigued, my arthritis is so bad and crippling, my anxiety and depression are back and I have panic attacks every night and really struggle falling asleep. It’s complete and utter hell. I share a kitchen with my family and I do everything in my capacity to make sure my food doesn’t get cross contaminated. I’ve completely cut out dairy recently but it doesn’t seem to make a big difference. I can no longer function especially with my gluten ataxia and brain fog. Is this normal for symptoms to reappear in the healing process? I do everything in my power to make sure I don’t get anything cross contaminated and double triple check ingredients lists to make sure it doesn’t contain gluten or is processed in any facility with gluten. I don’t even eat at restaurants and cook everything at home. I’ve also checked medications, skincare products, and vitamins and supplements to make sure I’m not getting gluten from that.

Because you have not done any testing yet to see if you have Celiac, and because you experienced new/more/continued symptoms despite being on the gluten-free diet, if I were you I would go back on gluten again for a few weeks and get the full Celiac blood lab panel done. You need clarity; you need to know what is really going on in your body. Making guesses is just grasping aimlessly in the dark and will not lead to answers and solutions. In my own journey over the past 10 years with ups and downs, the things that made the most difference in my health and in my life were the clarity and confidence gained from blood testing.

Celiac Panel:

Deamidated Gliadin Abs, IgA
Deamidated Gliadin Abs, IgG
t-Transglutaminase (tTG) IgA
t-Transglutaminase (tTG) IgG
Immunoglobulin A

Your story sounds like mine; I've dealt with a lot of brain fog, fatigue, and dizziness/vertigo off and on over the years. Autoimmunity causes fatigue and brain fog especially when the disease is in a flare-up;  you have at least one verified autoimmune disease (Ankylosing Spondylitis). This autoimmune disease itself could be responsible for some or maybe all of your symptoms. Have you spoken with your rheumatologist about your symptoms and treatment/medications?

[knitty kitty]

@KierstenL,

How are you doing?  What did you decide to do?