2 Months Post-Diagnosis, was feeling great but symptoms (new and old) came back with a vengeance

[Eric P.]

Hey guys, quick background on me. I am a highly active, 30 year old male, and was diagnosed with Celiacs a little over two months ago, immediately went gluten free and many of my symptoms began to resolve within about a month (diarrhea, major weight loss, extreme fatigue, tiredness, brain fog, headaches, to name a few). I returned to working out like I have the majority of my life (primarily weight lifting with high volume 5-6x/week) and have remained extremely diligent in proper diet. 
 

However, at approximately the two month mark of being strictly gluten free, I’ve began feeling extremely sickly again without reason I can identify (extreme fatigue has returned, have come close to passing out multiple times, frequent nausea, whole body weakness, dizziness, tinnitus, headaches have returned). Aforementioned, I have remained gluten free, have even significantly limited dairy/lactose, but still feel horrible and on the brink of anxiety each day. Mornings are by far the worse time for me, as I am extremely nauseous, dizzy, and feel as though I will pass out with any activity. Furthermore, I know it has only been around 8 weeks since diagnosis, however, I have been unsuccessful in putting any weight back on despite going on a high calorie diet (3,500-4,000) each day. As a former athlete and still extremely active today, my body has been used to accepting high caloric days as normal.

From a diet perspective, I have switched from whey protein to soy/pea proteins, take a recommended multivitamin daily, take an iron supplement daily, take a recommended prebiotic/probiotic/digestive enzyme supplement, eat plenty of lean meats, fruits and veggies, rice and beans, and refrain from eating any type of processed food. I had food sensitivity blood testing done and all food categories came back insignificant or negative for sensitivity (except tTg-IgA testing at time of diagnosis for gluten of course).
 

My overall question is, why all of a sudden is my health beginning to deteriorate again after when I thought I was making good progress after going gluten free? Has anyone else experienced this by chance? Is there some type of “rebound effect” associated with going gluten free that anyone else may have experienced around the 2-3 month mark? I welcome any and all feedback, please! I am becoming extremely frustrated, worried, and anxious as this is a major life change for me. 

- Eric P. 

[Scott Adams]

Hi Eric, welcome to the forum. It depends greatly on the condition that your gut was in at the time of your diagnosis, but most people take one to two years for their guts to fully recover: 

 
Be sure to double check everything in your diet to be sure that it is 100% gluten-free, including all of the supplements you’re taking. It’s also possible that you may need additional supplementation because not all vitamins are equal, some absorb better than others.

Another thing to consider is keeping a Food diary to eliminate other possible intolerance issues from things like soy, corn, dairy, eggs, etc., as many celiacs have other issues, especially right after diagnosis. These other issues may go away in time, as your gut heals. 

[Ennis-TX]

I know everyone is different but I found Pea protein always caused bloating and gas when my gut was unhappy. Soy you should probably avoid as a male, it can mess with your hormones.  I do well on Egg White protein, and Beef Protein Isolate, along with pumpkin seed protein. I found I did best on a Paleo based diet, and keto macros but that is again just me. You might use a food calculator to check your macros, and keep a food journal, it is not uncommon to use to develop other food intolerance issues or sensitivities. BTW have you seen the newbie 101 section to double check to see if you missed something, IE a gluten contaminated cutting board, colander, scratched pan, wooden spoon, or something that might have had wheat in it such as take out, or a new food that is prepackaged.

[cyclinglady]

Taking iron?  What were your ferritin levels?  Are you actually anemic?  If so, you should reduce your exercise routine until  you are no longer anemic.  Anemia can cause heart failure.  

https://www.mayoclinic.org/diseases-conditions/anemia/symptoms-causes/syc-20351360

I get trying to keep in shape, but this is the time to let your body heal.  Know that the gluten-free diet has a steep learning curve.  Even the smartest celiacs can make mistakes.  So, look for hidden gluten exposures.  Know that vitamins and supplements are processed foods.  Be careful!  Best to not eat out and if processed, look for “certified gluten” free first, then “gluten free”over products that just list ingredients and may not contain any gluten per the label.  Keep the food journal as suggested.  Celiacs often have many additional intolerances due to a damaged gut.   These are good strategies to maintain until you have mastered the diet and you are feeling well.  

[Awol cast iron stomach]

I struggled for 2 years and 4 months after my gluten challenge. I developed other food intolerances and my immune system was trigger sensitive. It still is more sensitive than I would like. I slept a lot. I was not a napper as a kid etc. I think I slept a lifetime of missed naps in those 28 months.

As other posters said above it takes time. My gi, cns, muscles, skin etc needed to heal. 

Good luck 

[knitty kitty]

Eric, sorry you're not feeling well.  

Have you been checked for vitamin deficiencies?  Celiac causes malabsorption which results in malnutrition.

Here's an article that might help.....

11 Signs and Symptoms of Thiamine (Vitamin B1) Deficiency

https://www.healthline.com/nutrition/thiamine-deficiency-symptoms

 

And more information on thiamine....

https://ods.od.nih.gov/factsheets/Thiamin-HealthProfessional/

 

Early thiamine deficiency symptoms are often overlooked by doctors unless you're an alcoholic, but people with Celiac and malabsorption can be deficient in thiamine and other B Complex vitamins and minerals. 

You can have normal levels in tests but still be deficient.  Many vitamins are used in the tissues, but the body will starve the tissues in order to keep a certain level in the blood stream to supply the brain. 

Some people have a higher metabolic need for more thiamine.  I have Type Two Diabetes and require more than the RDA.  

You need 50 mg of thiamine for every 1000 calories to process carbohydrates into energy.  You need more if you exercise.  Since you work out and are carbohydrates loading, you probably have a higher metabolic need for thiamine.  Exercise requires thiamine in order to provide energy to muscles.  

You said "extreme fatigue has returned, have come close to passing out multiple times, frequent nausea, whole body weakness, dizziness, tinnitus, headaches have returned."

These are the same symptoms I experienced before I was properly diagnosed with Celiac.  Irritability is another symptom. 

You can become deficient in a few days to a few weeks because thiamine cannot be stored in the body and must be consumed every day.  Since you are a new Celiac, you may have malabsorption and may be low in thiamine.  The consequences of untreated thiamine deficiency are severe.  Thiamine deficiency can precipitate a host of health problems.  I posted some articles in my blog.

Please get to your doctor and get checked for thiamine deficiency!

Hope this helps!  

14 hours ago, Eric P. said:

Hey guys, quick background on me. I am a highly active, 30 year old male, and was diagnosed with Celiacs a little over two months ago, immediately went gluten free and many of my symptoms began to resolve within about a month (diarrhea, major weight loss, extreme fatigue, tiredness, brain fog, headaches, to name a few). I returned to working out like I have the majority of my life (primarily weight lifting with high volume 5-6x/week) and have remained extremely diligent in proper diet. 
 

However, at approximately the two month mark of being strictly gluten free, I’ve began feeling extremely sickly again without reason I can identify (extreme fatigue has returned, have come close to passing out multiple times, frequent nausea, whole body weakness, dizziness, tinnitus, headaches have returned). Aforementioned, I have remained gluten free, have even significantly limited dairy/lactose, but still feel horrible and on the brink of anxiety each day. Mornings are by far the worse time for me, as I am extremely nauseous, dizzy, and feel as though I will pass out with any activity. Furthermore, I know it has only been around 8 weeks since diagnosis, however, I have been unsuccessful in putting any weight back on despite going on a high calorie diet (3,500-4,000) each day. As a former athlete and still extremely active today, my body has been used to accepting high caloric days as normal.

From a diet perspective, I have switched from whey protein to soy/pea proteins, take a recommended multivitamin daily, take an iron supplement daily, take a recommended prebiotic/probiotic/digestive enzyme supplement, eat plenty of lean meats, fruits and veggies, rice and beans, and refrain from eating any type of processed food. I had food sensitivity blood testing done and all food categories came back insignificant or negative for sensitivity (except tTg-IgA testing at time of diagnosis for gluten of course).
 

My overall question is, why all of a sudden is my health beginning to deteriorate again after when I thought I was making good progress after going gluten free? Has anyone else experienced this by chance? Is there some type of “rebound effect” associated with going gluten free that anyone else may have experienced around the 2-3 month mark? I welcome any and all feedback, please! I am becoming extremely frustrated, worried, and anxious as this is a major life change for me. 

- Eric P. 

 

Edited April 26, 2020 by knitty kitty
Hit wrong button before finished

[Guest059483]

Comment Deleted.

 

[Cleopatra]

6 hours ago, knitty kitty said:

Eric, sorry you're not feeling well.  

Have you been checked for vitamin deficiencies?  Celiac causes malabsorption which results in malnutrition.

Here's an article that might help.....

11 Signs and Symptoms of Thiamine (Vitamin B1) Deficiency

https://www.healthline.com/nutrition/thiamine-deficiency-symptoms

 

And more information on thiamine....

https://ods.od.nih.gov/factsheets/Thiamin-HealthProfessional/

 

Early thiamine deficiency symptoms are often overlooked by doctors unless you're an alcoholic, but people with Celiac and malabsorption can be deficient in thiamine and other B Complex vitamins and minerals. 

You can have normal levels in tests but still be deficient.  Many vitamins are used in the tissues, but the body will starve the tissues in order to keep a certain level in the blood stream to supply the brain. 

Some people have a higher metabolic need for more thiamine.  I have Type Two Diabetes and require more than the RDA.  

You need 50 mg of thiamine for every 1000 calories to process carbohydrates into energy.  You need more if you exercise.  Since you work out and are carbohydrates loading, you probably have a higher metabolic need for thiamine.  Exercise requires thiamine in order to provide energy to muscles.  

You said "extreme fatigue has returned, have come close to passing out multiple times, frequent nausea, whole body weakness, dizziness, tinnitus, headaches have returned."

These are the same symptoms I experienced before I was properly diagnosed with Celiac.  Irritability is another symptom. 

You can become deficient in a few days to a few weeks because thiamine cannot be stored in the body and must be consumed every day.  Since you are a new Celiac, you may have malabsorption and may be low in thiamine.  The consequences of untreated thiamine def

21 hours ago, Eric P. said:

Hey guys, quick background on me. I am a highly active, 30 year old male, and was diagnosed with Celiacs a little over two months ago, immediately went gluten free and many of my symptoms began to resolve within about a month (diarrhea, major weight loss, extreme fatigue, tiredness, brain fog, headaches, to name a few). I returned to working out like I have the majority of my life (primarily weight lifting with high volume 5-6x/week) and have remained extremely diligent in proper diet. 
 

However, at approximately the two month mark of being strictly gluten free, I’ve began feeling extremely sickly again without reason I can identify (extreme fatigue has returned, have come close to passing out multiple times, frequent nausea, whole body weakness, dizziness, tinnitus, headaches have returned). Aforementioned, I have remained gluten free, have even significantly limited dairy/lactose, but still feel horrible and on the brink of anxiety each day. Mornings are by far the worse time for me, as I am extremely nauseous, dizzy, and feel as though I will pass out with any activity. Furthermore, I know it has only been around 8 weeks since diagnosis, however, I have been unsuccessful in putting any weight back on despite going on a high calorie diet (3,500-4,000) each day. As a former athlete and still extremely active today, my body has been used to accepting high caloric days as normal.

From a diet perspective, I have switched from whey protein to soy/pea proteins, take a recommended multivitamin daily, take an iron supplement daily, take a recommended prebiotic/probiotic/digestive enzyme supplement, eat plenty of lean meats, fruits and veggies, rice and beans, and refrain from eating any type of processed food. I had food sensitivity blood testing done and all food categories came back insignificant or negative for sensitivity (except tTg-IgA testing at time of diagnosis for gluten of course).
 

My overall question is, why all of a sudden is my health beginning to deteriorate again after when I thought I was making good progress after going gluten free? Has anyone else experienced this by chance? Is there some type of “rebound effect” associated with going gluten free that anyone else may have experienced around the 2-3 month mark? I welcome any and all feedback, please! I am becoming extremely frustrated, worried, and anxious as this is a major life change for me. 

- Eric P. 

iciency are severe.  Thiamine deficiency can precipitate a host of health problems.  I posted some articles in my blog.

Please get to your doctor and get checked for thiamine deficiency!

Hope this helps!  

 

Hi Eric,

I'm also experiencing a fluctuation in my symptoms, for 1,5 months gluten free. Hard to accept that recovery is harder than expected. I hope it gets better soon.

Regarding weight gain, I discovered that the more I eat the less my gut can recover. I'm also on a high calorie diet, as I have been slowly but steadily loosing weight for months before have diagnostised. I ate as much as I could to gain weight (and I could because I have good appetite). However constant digesting is not healthy. Since I tried to eat 5 times a day, not more, and eat normal portions not huge ones, I could gain weight. Not checking my weight constantly is also helpful, as I developed anxiety about my health.

 

[Eric P.]

21 hours ago, Scott Adams said:

Hi Eric, welcome to the forum. It depends greatly on the condition that your gut was in at the time of your diagnosis, but most people take one to two years for their guts to fully recover: 

 
Be sure to double check everything in your diet to be sure that it is 100% gluten-free, including all of the supplements you’re taking. It’s also possible that you may need additional supplementation because not all vitamins are equal, some absorb better than others.

Another thing to consider is keeping a Food diary to eliminate other possible intolerance issues from things like soy, corn, dairy, eggs, etc., as many celiacs have other issues, especially right after diagnosis. These other issues may go away in time, as your gut heals. 

Hey Scott, thanks for taking the time to respond! It seems the general consensus is that time is the biggest factor here, which I definitely understand. One thing I forgot to mention was that my Celiacs was triggered by an independent virus, at which time triggered the autoimmune reaction, resulting in the celiac diagnosis (confirmed by antibody testing and endoscopy). I know I've become antsy and I am sure many others have felt the same way as I have once diagnosed. As of now, I keep a general log of food consumption each day mainly for calorie purposes, but that's a good idea to break it into specific food categories to determine specific intolerances I may have developed in conjunction with my current diagnosis.

Edited April 26, 2020 by Eric P.

[Eric P.]

9 hours ago, knitty kitty said:

Eric, sorry you're not feeling well.  

Have you been checked for vitamin deficiencies?  Celiac causes malabsorption which results in malnutrition.

Here's an article that might help.....

11 Signs and Symptoms of Thiamine (Vitamin B1) Deficiency

https://www.healthline.com/nutrition/thiamine-deficiency-symptoms

 

And more information on thiamine....

https://ods.od.nih.gov/factsheets/Thiamin-HealthProfessional/

 

Early thiamine deficiency symptoms are often overlooked by doctors unless you're an alcoholic, but people with Celiac and malabsorption can be deficient in thiamine and other B Complex vitamins and minerals. 

You can have normal levels in tests but still be deficient.  Many vitamins are used in the tissues, but the body will starve the tissues in order to keep a certain level in the blood stream to supply the brain. 

Some people have a higher metabolic need for more thiamine.  I have Type Two Diabetes and require more than the RDA.  

You need 50 mg of thiamine for every 1000 calories to process carbohydrates into energy.  You need more if you exercise.  Since you work out and are carbohydrates loading, you probably have a higher metabolic need for thiamine.  Exercise requires thiamine in order to provide energy to muscles.  

You said "extreme fatigue has returned, have come close to passing out multiple times, frequent nausea, whole body weakness, dizziness, tinnitus, headaches have returned."

These are the same symptoms I experienced before I was properly diagnosed with Celiac.  Irritability is another symptom. 

You can become deficient in a few days to a few weeks because thiamine cannot be stored in the body and must be consumed every day.  Since you are a new Celiac, you may have malabsorption and may be low in thiamine.  The consequences of untreated thiamine deficiency are severe.  Thiamine deficiency can precipitate a host of health problems.  I posted some articles in my blog.

Please get to your doctor and get checked for thiamine deficiency!

Hope this helps!  

 

Thanks for the insight! Unfortunately, I've had blood work done both pre- and post- diagnosis, multiple times; and each time all electrolyte/vitamin levels come back well within normal ranges. I already take a daily multivitamin which provides more than enough of almost all my B vitamins and fat soluble nutrients. Likewise, I take a B vitamin complex powder mix throughout each day to maintain electrolyte balance, especially when working out. Nevertheless, I will definitely be contacting my PCP to get further blood work done because who knows what may have changed in just a course of a week's time.

[Eric P.]

9 hours ago, Awol cast iron stomach said:

I struggled for 2 years and 4 months after my gluten challenge. I developed other food intolerances and my immune system was trigger sensitive. It still is more sensitive than I would like. I slept a lot. I was not a napper as a kid etc. I think I slept a lifetime of missed naps in those 28 months.

As other posters said above it takes time. My gi, cns, muscles, skin etc needed to heal. 

Good luck 

Wow, I cannot imagine feeling how I feel for 2+ years! I am sorry to hear that it took so long for your body to finally stabilize. Was there anything in particular you noticed that helped finally get you over the edge to recovery (certain vitamins, specific foods, specific activities, etc.)?

[GFinDC]

Hi Eric,

It sounds like you have a taken a pretty good approach to  going gluten-free.  The first 6 months can be a roller coaster ride digestion wise.

I agree with Ennis_Tx suggestion about eliminating soy.  Actually, I suggest you eliminate any protein powders or weight/muscle gain powders and supplements for 6 months.  It is best to avoid them IMHO when starting the gluten-free diet.  Supplements are not well regulated and so are not particularly safe for celiacs IMHO.

I think soy is bad for most people.  It is one of the top food allergens.  Celiac disease is not an allergic reaction but it is an autoimmune reaction.  People can have immune reactions in the gut that don't show up on allergy tests.

Time is your friend with celiac disease healing.  The immune system doesn't stop defending the day you quit eating gluten.  It can continue attacking for weeks to months afterwards.  The gut can't heal properly while the immune system is actively attacking it.  I suggest you back off exercize for awhile too. While vitamins and minerals can be helpful to take they are not as easy to absorb as food sources.

Some foods to avoid are carbs/sugar, oats, dairy, soy, and anything that causes you to bloat/have digestion issues.  Don't forget to verify all supplements. teas, drinks of whatever kind and meds are gluten-free also.

[Em-Mae]

On 4/25/2020 at 10:32 AM, Eric P. said:

Hey guys, quick background on me. I am a highly active, 30 year old male, and was diagnosed with Celiacs a little over two months ago, immediately went gluten free and many of my symptoms began to resolve within about a month (diarrhea, major weight loss, extreme fatigue, tiredness, brain fog, headaches, to name a few). I returned to working out like I have the majority of my life (primarily weight lifting with high volume 5-6x/week) and have remained extremely diligent in proper diet. 
 

However, at approximately the two month mark of being strictly gluten free, I’ve began feeling extremely sickly again without reason I can identify (extreme fatigue has returned, have come close to passing out multiple times, frequent nausea, whole body weakness, dizziness, tinnitus, headaches have returned). Aforementioned, I have remained gluten free, have even significantly limited dairy/lactose, but still feel horrible and on the brink of anxiety each day. Mornings are by far the worse time for me, as I am extremely nauseous, dizzy, and feel as though I will pass out with any activity. Furthermore, I know it has only been around 8 weeks since diagnosis, however, I have been unsuccessful in putting any weight back on despite going on a high calorie diet (3,500-4,000) each day. As a former athlete and still extremely active today, my body has been used to accepting high caloric days as normal.

From a diet perspective, I have switched from whey protein to soy/pea proteins, take a recommended multivitamin daily, take an iron supplement daily, take a recommended prebiotic/probiotic/digestive enzyme supplement, eat plenty of lean meats, fruits and veggies, rice and beans, and refrain from eating any type of processed food. I had food sensitivity blood testing done and all food categories came back insignificant or negative for sensitivity (except tTg-IgA testing at time of diagnosis for gluten of course).
 

My overall question is, why all of a sudden is my health beginning to deteriorate again after when I thought I was making good progress after going gluten free? Has anyone else experienced this by chance? Is there some type of “rebound effect” associated with going gluten free that anyone else may have experienced around the 2-3 month mark? I welcome any and all feedback, please! I am becoming extremely frustrated, worried, and anxious as this is a major life change for me. 

- Eric P. 

The biggest thing I’m thinking here is cross contamination. You could be eating everything right and being super careful but if your food has been cross contaminated with something else containing gluten you would be getting the symptoms all over again.
Another thing is plastic, be it bowls/plates/colander...they hold the gluten and will definitely make you sick.
I treat gluten as if it’s raw meat, and wipe down counters, and wash my hands before I eat. I also have a separate toaster I use.
Another thing is if you’re eating things that only say “gluten free” and not certified gluten free, you could be sensitive to more than 10 ppm of gluten. Certified gluten free is less than 10 ppm. I am highly sensitive and have to buy everything certified gluten free. I do not trust it if it only claims to be gluten free without the circle verifying it’s been tested for less than 10 part per million. I hope this information helps you.

Edited April 28, 2020 by Em_Mae
I’m a noob at this