Four months in, labs show progress, still having some symptoms.

[cnazrael89]

Hello, I was diagnosed with Celiac disease via biopsy/blood. I am a 33 year old male. I went gluten free immediately after my EGD on 10/24/22 due to the doctor's recommendations. I am just over 4 months strict gluten free diet. I have not seen the inside of a restaurant since diagnosis and prepare all of my own food in a gluten free household for all meals and work lunches etc.

I was doing pretty good symptom-wise but for the past several weeks I have been feeling "off" again and having very bad daily headaches and fatigue. They feel identical to the headaches I was getting prior to diagnosis and identical to the headache I got early on in my gluten free journey when I accidently ingested gluten. They are intense headaches that last for days at a time without letting up and then go away briefly and then come back again. I have also on several occasions had intense gas pains/bloating for a 12 hour period and then it goes away again. I reached out to my GI doctor about the above symptoms. I really wanted to get all my labs checked at the 6 month mark but she thought it was important to check earlier to make sure things were okay in that regard since I have been on supplementation. I had a slight copper deficiency at diagnosis and was diagnosed with osteoporosis by DEXA scan shortly after my diagnosis. My B vitamins were all technically fine at time of diagnosis other than my B6 was elevated but I still have been supplementing with B complex. My Zinc was double the high normal value at time of diagnosis without being on a zinc supplement. I had vitamin D insufficiency at diagnosis as well.

Since being diagnosed I have been supplementing with B complex (50) daily, Benfotiamine 150mg three times daily, copper glycinate 2mg daily, Vitamin D 5,000 units twice a day, Calcium Citrate 333mg daily (was taking 1000mg initially but figured out how to get the rest from diet), Vitamin K2 (300mcg MK-7, 100mcg MK-4) daily, Magnesium glycinate 200mg (elemental) nightly. I take all my supplements on a scheduled basis and I am very diligent about taking them consistently.

Labs showed the following:

Copper went up to 64.9 from 63.1 (normal 70-140)

Zinc came down to 67.5 from 237.2 (normal 60-120)

Vitamin D 25 Hydroxy went up to 67.9 from 27 (normal 30-100)

ttg-iga came down to 3 from 11 (normal 0-3)

dgp-igg came down to 51 from 94 (normal 0-19)

I was very happy to see the nice downward trend of my antibodies after 4 months! Some minor tweaking of my copper supplement to help bring that up some more, but it looks like all my labs are doing okay. I didn't get any B vitamins rechecked since I have been supplementing and didn't take any kind of break prior to labs being drawn. I did get a CBC and CMP drawn as well but all was basically normal there other than it looked like I was slightly dehydrated.

Anyone have any inclination to why I may be getting these headaches that feeling like I'm being glutened? I really don't think it is related to being glutened. I have thought about a small chance of me being cross-contaminated by the meat I buy at the grocery store due to having a butcher there that prepares/packages the meat in the store. I plan on talking to them about their processes to see if that might be why I'm feeling like I'm getting glutened. Besides that, I have checked everything in my diet and all checked out. My numbers are trending down, so I wouldn't think I would be getting glutened as frequently as my headaches are.

If anyone has any thoughts on this or any suggestions, I am open to hear them! 

Thanks!

 

[RMJ]

How do you define strictly gluten free with respect to processed foods? I have a degree in Nutrition Science so I thought all I had to do was read labels and not eat foods with gluten ingredients.  For me that wasn’t enough to get all my antibody levels back down to normal ranges. Then I only ate foods labeled gluten free.  Still not enough.  I have to have processed foods that are certified gluten free or from companies with excellent reputations in the celiac world (and sometimes foods from those companies still don’t work for me).  

Also, do you eat oatmeal?  Oats can cause troubles for some people with celiac even if they are certified gluten free.

Is there something that changed in your diet, supplements or life just prior to your symptoms returning?  

[cnazrael89]

For the large majority of my diet I am eating fresh fruit, fresh vegetables, potatoes (russet and sweet), chicken, beef, pork, canned tuna (labeled Gluten free), eggs, and certified gluten free rice. We have some gluten free oreo's that are certified gluten free that I have eaten a few of, and we have some certified gluten free "pringle" type chips that I seldom eat but my family likes them.

I drink 1 cup of calcium fortified orange juice per day (no labeling regarding gluten), soy milk labeled gluten free, 2 cups of coffee per day with gluten free creamer and water.

I make a soy milk/chia seed (certified gluten free) drink that I have everyday.

I eat oikos certified gluten free yogurt, my peanut butter is labeled gluten free and I eat a gluten free Larabar every day.

I have stayed away from oats completely.

The processed foods we do have in the house are either labeled gluten free or certified but those are mostly for my wife and kids as I personally have been trying to stick with minimally processed foods. Ultimately, if I am having something that is processed it is either labeled gluten free or certified gluten free.

Supplements are all labeled gluten free and have not changed.

After writing this and reading your response, I thought more in depth if anything else could have changed in the last month. The only thing I could come up with was I bought some blended McCormick spices for meats that are labeled gluten free after reading about how McCormick seems trustworthy. After thinking about it, I started to have an influx of symptoms several days after starting to use those spices. We have been using 3 different blends and we use them on the meat and then also some on potatoes/veggies. I have ingested some amount of those spices every day since buying them. I didn't think it could be the spices because they are labeled gluten free and didn't think I could be that sensitive. Before buying those spices I was using single ingredient spices labeled gluten free. I am going to put the spices aside for a period of time and see if things calm back down. If things calm down, I think I may have my answer. I was consistently thinking it had to be the meat from the grocery store getting contaminated by the butcher but maybe its just the spices all along....

If that is the case and I determine it to be the spices, does that mean I'm fairly sensitive if I react to spices that are labeled gluten free? Would you then recommend trying to only use certified gluten free spices or just go back to using single ingredient gluten free spices and making my own blends?

Thanks for helping me come to what seems like a very obvious solution to my question. I hope that is all it is, as that would be an easy fix! 

 

[RMJ]

I hope you’ve found the solution! Please let us know how it goes.

I don’t get symptoms (I’m a silent celiac) but my antibody levels respond to prolonged gluten contamination.  For example, I discovered I cannot use Bob’s Red Mill gluten free flours, even though they have an excellent reputation in the celiac world and most people can use them. 

[nutritionguy]

An excellent reference I would highly recommend:

Real Life With Celiac Disease: Troubleshooting and Thriving Gluten Free, authored by Melinda Dennis, MS, RD, LDN, and Daniel A. Leffler, MD, MS, associated with The Celiac Center at Beth Israel Deaconess Medical Center (associated with Harvard).  You may get some good nutritional ideas when you look at their recommendations.

[Beverage]

I think Spicely brand of spices might actually be certified gluten-free. I use Morton & Basset, labeled gluten-free. Also consider magnesium deficiency can bring on headaches.

[nutritionguy]

On 2/28/2023 at 9:06 PM, cnazrael89 said:

Hello, I was diagnosed with Celiac disease via biopsy/blood. I am a 33 year old male. I went gluten free immediately after my EGD on 10/24/22 due to the doctor's recommendations. I am just over 4 months strict gluten free diet. I have not seen the inside of a restaurant since diagnosis and prepare all of my own food in a gluten free household for all meals and work lunches etc.

I was doing pretty good symptom-wise but for the past several weeks I have been feeling "off" again and having very bad daily headaches and fatigue. They feel identical to the headaches I was getting prior to diagnosis and identical to the headaFFche I got early on in my gluten free journey when I accidently ingested gluten. They are intense headaches that last for days at a time without letting up and then go away briefly and then come back again. I have also on several occasions had intense gas pains/bloating for a 12 hour period and then it goes away again. I reached out to my GI doctor about the above symptoms. I really wanted to get all my labs checked at the 6 month mark but she thought it was important to check earlier to make sure things were okay in that regard since I have been on supplementation. I had a slight copper deficiency at diagnosis and was diagnosed with osteoporosis by DEXA scan shortly after my diagnosis. My B vitamins were all technically fine at time of diagnosis other than my B6 was elevated but I still have been supplementing with B complex. My Zinc was double the high normal value at time of diagnosis without being on a zinc supplement. I had vitamin D insufficiency at diagnosis as well.

Since being diagnosed I have been supplementing with B complex (50) daily, Benfotiamine 150mg three times daily, copper glycinate 2mg daily, Vitamin D 5,000 units twice a day, Calcium Citrate 333mg daily (was taking 1000mg initially but figured out how to get the rest from diet), Vitamin K2 (300mcg MK-7, 100mcg MK-4) daily, Magnesium glycinate 200mg (elemental) nightly. I take all my supplements on a scheduled basis and I am very diligent about taking them consistently.

Labs showed the following:

Copper went up to 64.9 from 63.1 (normal 70-140)

Zinc came down to 67.5 from 237.2 (normal 60-120)

Vitamin D 25 Hydroxy went up to 67.9 from 27 (normal 30-100)

ttg-iga came down to 3 from 11 (normal 0-3)

dgp-igg came down to 51 from 94 (normal 0-19)

I was very happy to see the nice downward trend of my antibodies after 4 months! Some minor tweaking of my copper supplement to help bring that up some more, but it looks like all my labs are doing okay. I didn't get any B vitamins rechecked since I have been supplementing and didn't take any kind of break prior to labs being drawn. I did get a CBC and CMP drawn as well but all was basically normal there other than it looked like I was slightly dehydrated.

Anyone have any inclination to why I may be getting these headaches that feeling like I'm being glutened? I really don't think it is related to being glutened. I have thought about a small chance of me being cross-contaminated by the meat I buy at the grocery store due to having a butcher there that prepares/packages the meat in the store. I plan on talking to them about their processes to see if that might be why I'm feeling like I'm getting glutened. Besides that, I have checked everything in my diet and all checked out. My numbers are trending down, so I wouldn't think I would be getting glutened as frequently as my headaches are.

If anyone has any thoughts on this or any suggestions, I am open to hear them! 

Thanks!

--------------------------------------------------------------------------------------------------------------

From "Real Life With Celiac Disease", Melinda Dennis, MS, RD, LDN, and Daniel A. Leffler, MD, MS, The Celiac Center at Beth Israel Deaconess Medical Center:

Chapter 37:  Maladsorption of Fructose, Lactose, and Related Carbohydrates

" The human intestine's ability to absorb fructose and several other short-chain carbohydrates is relatively limited.  These carbohydrates include fermentable oligosaccharides, disaccharides, monosaccharides, and polls (FODMAPs).  The FODMAPs are fructose(apples, pears, honey), fructans...., galactans (cabbage, legumes), lactose... and polyol sweeteners that include sorbitol (peaches, plums, apricots, nectarines, cherries) xylitol, mannitol (cauliflower, mushrooms), and isomalt, which are also found in many sugar-free products.

It is normal to not absorb FODMAPS well.  However, when you have a gastrointestinal disorder such as celiac disease or irritable bowel syndrome, this incomplete absorption can cause gastrointestinal symptoms.....FODMAPS...are rapidly fermented by bacteria, producing gas and short chain fatty acids, which typically cause bloating, gas, cramping, and diarrhea.  We see many patients with celiac disease who appear to be following strict GFD (gluten free diet) but have persistent symptoms that are related to ingesting FODMAPs.    Fortunately, these symptoms can often be relieved by making specific dietary changes."

 

On 2/28/2023 at 9:06 PM, cnazrael89 said:

 

 

Please take a look at the quote I included above from the book "Real Life With Celiac Disease".

[cnazrael89]

On 3/2/2023 at 6:44 PM, RMJ said:

I hope you’ve found the solution! Please let us know how it goes.

I have been free from headaches since eliminating the spices...I have since broke out with the lovely itchy rash on both hands though. I am assuming it is DH as I have had this before but not since going gluten free. 

 

On 3/7/2023 at 5:50 PM, Beverage said:

I think Spicely brand of spices might actually be certified gluten-free. I use Morton & Basset, labeled gluten-free. Also consider magnesium deficiency can bring on headaches.

Thank you for the reference! I will check this out. My magnesium was 1.9 on blood draw and I had been taking just 200mg of elemental magnesium glycinate in the evening. I have started taking my magnesium in the morning and night for the past few days.

 

On 3/7/2023 at 4:51 PM, nutritionguy said:

An excellent reference I would highly recommend:

Real Life With Celiac Disease: Troubleshooting and Thriving Gluten Free, authored by Melinda Dennis, MS, RD, LDN, and Daniel A. Leffler, MD, MS, associated with The Celiac Center at Beth Israel Deaconess Medical Center (associated with Harvard).  You may get some good nutritional ideas when you look at their recommendations.

Thank you for the book idea, I appreciate your help! I'm going to check this out! Thanks for including the quote about FODMAP diet as well! Makes sense.

[Wheatwacked]

On 3/1/2023 at 12:06 AM, cnazrael89 said:

Vitamin K2

10 grams of fresh parsley has 164 mcg of vitamin K. The RDA is 120. Restaurants used to put parsley on everything, but called it garnish and I don't think anyone ate it. Who knew?

Gall bladder like symptoms trouble digesting fats, could be not enough choline.  High homocysteine could indicate a problem with Choline, Folate, or B6.

Inulin: soluable fiber that the good gut bacteria love to eat.  As your gut biome evolves you may find you have to lay off some foods for a while.

Mouthwash, toothpaste etc? Medications? for hidden gluten. Some have reacted to the glue on toilet paper.

On 3/1/2023 at 12:06 AM, cnazrael89 said:

normal there other than it looked like I was slightly dehydrated.

" Even mild dehydration can cause a headache. Usually, other symptoms of dehydration (such as fatigue, dizziness, extreme thirst and dry mouth) appear along with headache pain."   https://my.clevelandclinic.org/health/diseases/21517-dehydration-headache#:~:text=A dehydration headache happens when,and taking pain relief medication.

Some people can get headaches from soy.  "

"Tyramine is known to trigger headaches and is likely the culprit behind your after soy-meal discomfort."https://www.healthdigest.com/396821/if-you-get-a-headache-after-eating-soy-heres-why/

Try 100% Grass Fed milk. Better taste, one fifth the omega 6.

Good job on the D. Mine is holding steady at 80 ng/ml. 

7 years of 10.000 IU a day.

 

 

[cnazrael89]

@Wheatwacked

Thank you for all the valuable info and links! I appreciate your input and tips! Haven't been using mouthwash and toothpaste is gluten free. I'm not on any prescription meds at this time and did finally find some gluten free labeled generic Tylenol which has been much appreciated as I was just trying to tough my way through the constant headaches. Thankfully, for now it appears the headaches have dissipated since stopping the "gluten free" labeled Mccormick blended spices. I think I was having a gluten reaction to them. Since stopping them, headaches are gone, I have a bilateral hand rash (much like I've had in the past prior to diagnosis and gluten free), fissures flared up again, and I have little pimple like bumps (different from the itchy rash) spread out on my chest and back that weren't there before! It feels like this may be the way my body is responding to my antibodies coming down and getting more sensitive to trace gluten in a gluten free labeled spice. This is my first experience with something causing a gluten reaction that is labeled gluten free and I used the product for several weeks to a month without realizing it was that! So now my body is trying to normalize I think. Thanks again!

[knitty kitty]

This article is interesting...

 

[Wheatwacked]

3 hours ago, cnazrael89 said:

gluten free labeled generic Tylenol

I stick to Alka Seltzer. covers indigestion and minor aches and pains in one fizzy drink. Bicarbonate and aspirin. Acetylsalicilic Acid. Did you know that Salicillic Acid is vitamin B11? I have always avoided other Nsaids for potential liver damage and Tylenol for kidney damage.