Celiac Or Something Else? Some Things Got Worse After Going gluten-free

[radley]

Howdy! I am a self-diagnosed Celiac.

OK, so I was diagnosed with Hypothyroism and I decided to go gluten-free. Now I'm in my 8th month. Inintially I felt better, my anxiety/depression went away. However that was hort-lived as I started reacting to different foods after going gluten-free. My initial gluten test was negative but my second, thorough allergy test showed I have allergy to gluten, whear, corn, eggs, beans, yeast, bell pepper. I had some bad reactions from eggs (or peppers, I'm not sure. I guess it was the mayonaise) and I stopped them. Yet, when I tried some bread I had no reaction whatsoever. And I had no reaction munching on a gluten-free cake containing eggs. Isn't it strange that when I eat some (white nonetheless) bread and Lindth candy that contains some maltz extract I don't have any reaction? Yet I reacted to a gluten-free chocolate with Maltitol. I was militant for gluten-free so cross-contamination didn't happen and when I tried bread again I had no reaction to it. I never had any food allergies as a kid.

 

Here is a summary of my health after going gluten-free:

 

+ elevated mood

+ less anxiety/depression

+ diarrea went away

- sinusitis: no change

- food allergies

- constipation (sometimes it gets severe)

- stomach cramps

- my intestines became lazy

- loss of stomach acidicy

- lost too much weight too fast

- skin is paler (iron defficiency?)

 

Could I be gluten-tolerant? Do you think my issues might have been caused by the processing of most packaged foods or having Crohn's or IBS rather than gluten? Could it be that gluten foods made my gut feel worse because I had IBS in the first place, but I am not allergic to it? Do you think I should do a third blood test in a different lab? I live in Eastern Europe now so Celiac is almost unheard of over here.

[nvsmom]

Thyroiditis can mess with your stomach and can actually cause a weak positive result for the anti-tissue transglutaminase (tTG IgA and tTG IgG) which can cause intestinal  problems. It is possible that your thyroid problem is affecting your health. That being said, there is a strong link between thyroiditis and celiac disease, so if you have a gluten intolerance, there is a chance celiac disease  is the problem.... Keep in mind, we are not doctors here and are just commenting from experience.

 

Do you know what celiac disease tests you had done?  These are the medically accepted blood tests done for celiac disease:

• TG IgA and tTG IgG
• DGP IgA and DGP IgG
• EMA IgA
• total serum IgA (a control test)
• AGA IgA and AGA IgG (older, less reliable tests that are not used as frequently now)

You must be eating gluten (equivalent of 1-2 slices of bread per day) for 8-12 weeks prior to testing for them to be accurate.  As it is, there is still a small chance of false negatives occurring.

 

There is not an allergy to gluten.  Allergies are IgE based, and as far as I know there is not an allergy to gluten. On the other hand, wheat allergies are not uncommon.

 

Were you tested for food sensitivities by a naturopath or something?  Those tend to look for IgG reactions (I think). Just be aware that the mediacl community does not accept a gluten sensitivity test as diagnostic. Right now doctors will only accept a positive response to the gluten-free diet for a diagnosis of non-celiac gluten sensitivty (NCGS).

 

If you do have celiac disease or NCGS, you need to stop eating all gluten - no more "testing". Not all celiacs or those with NCGS, have an obvious reaction to gluten every time they consume it. Some have no obvious reaction at all but that doesn't mean that their body is not being damaged inside! I do not always have a severe reaction immediately when I eat gluten (by accident) even though I know I am a celiac.  We have to be careful and protect ourselves.  Right?  

 

So... you are wondering if you do not have a gluten sensitivity?  Are you back to where you were (health wise) 8 months ago? If you are exactly back to where you were 8 months ago, and you were 100% gluten-free the whole time (except for an accident or two), then I would say, yes - there is a good chance that gluten is not an issue for you.

 

On the other hand, if you are better than you were but have noticed new problems, then I would guess that the cause is a new source, like eggs, yeast or corn. Try cutting the listed sensitivities from your diet for 3-6 months and see how you feel then? Keeping a food and symptoms journal may help you pinpoint the problem foods.

 

Good luck!

[radley]

Well in fact I've had some mood swings even while being totally gluten-free, so I guess it's something else and not gluten that causes it. Maltodextrin or intolerance to some other junk substances found in processed foods I guess? In fact gluten-free junk food like cookies or gluten-free bread also made my mood crash pretty fast. I felt best when I only ate poultry, fruits and vegetables. But I have junk food (mostly floor-based) cravings I cannot overcome. And I'm always feeling hungry and malnutritioned when I have no bread. My skin looks pale and anaemic and I decided to stop all the supplements I was taking as they were too many (Selenium, Zinc, Kelp, Magnesium, etc.) and taking so many is bad for the liver. I need a break from all them.

[radley]

After a gluten challenge my anxiety and depression came back so I'm sure I'm celiac. I haven't changed anything in my diet or habits. I just need to avoid raw pepper and mayonnaise when going gluten-free because of the resulting leaky gut.

 

Here is my history

 

2000: First, mild signs of Celiac

2002: Depression

2004: Anxiety

2013: Thyroid issues

2014 Jan-March: gluten-free, depression and anxiety went away. First time I felt great since 2001!

2014 April-May: Leaky gut-induced allergic reactions to raw pepper and mayonaise.

2014 June-August: Gluten challenge, depression slowly returned

2014 Sept: gluten-free again

[nvsmom]

Welcome back.

 

I'm sorry the gluten challenge hit you so hard.  Did you get tested after the challenge?  If not, you might want to do it right away so you know if you are dealing with celiac disease or the more common non-celiac gluten sensitivity (NCGS), which has almost all the same symptoms that a celiac has.

 

Hope you feel well again soon.

[radley]

Hello all, long time no see, the forum has changed it's looks a lot lol. ? I had autoimmune Hashimoto's thyroid disease, but now it has turned to Grave's so I'm too skinny! I went back to eating grains but I think it made my goiter to grow larger! Yet, every time I test for gluten or Celiac it comes of negative, except on one gluten/wheat allergy test in 2014. Is it possible I'm reacting to something else in wheat/bread like yeast (I have since got dx with mold allergy) or other wheat proteins? I had all the classic Celiac symptoms like swollen belly, brain fog, joint pain, pale skin, vit. D deficiency etc. in my teens before my thyroid dx. Here are my latest Celiac panel results:

Antigliadine antibodies IgG: 1 
Anti tissue glutaminase IgA: 1 
Anti tissue transglutaminase IgG: 1 
Antigliadine antibodies IgA: 2

Where: 0-5 = (-) negative; 6-10 = borderline; >11 = (+) positive

As you can see, all of them are negative. Yet my wheat and yeast allergy test came back positive (strangely I was also positive to corn, peppers, eggs, and oats but negative to hard wheat for pasta and tomatoes?). I quit my gluten-free diet as I thought I was becoming more intolerant to other things. Apparently when going gluten-free it's best to eat cooked food and avoid raw foods I was found to react to in the first year until the immune system regulates itself and stops overreacting. I've read there are other proteins in wheat besides gluten that are pro-inflammatory. I still remember and miss those days when my brain functioned normally and I didn't have brain fog and anxiety plus depression. Would you quit gluten/grains again in my case or severely lower their amounts in your diet? I'm still vitamin D deficient despite sun exposure, but iron and vit. b12 are normal.

[cyclinglady]

Hi!  

I am sorry that you are still struggling.  

You can not rule out celiac disease for a variety of reasons.  First, you did not show an Immunoglobulin A (IgA) test result which NVSMOM pointed out years ago that is used as a control test when trying to diagnose celiac disease.  If you are IgA deficient, your IgA-type celiac tests would be invalid (will not work).  Then there are 10% of celiac who are seronegative.  These celiacs never test positive on the blood tests.  Intestinal biopsies obtained via an endoscopy usually confirma celiac disease diagnosis.  An endoscopy can help rule out other GI issues like Gastritis, SIBO, Crohn’s, H. Pylori, etc.  

It sounds like you have a confirmed wheat allergy which is different from an autoimmune response.  You can be allergic to wheat and still have celiac disease too.  Since you have autoimmune thyroiditis, your risk for celiac disease is high.  

Remember, ALL, yes ALL, celiac disease testing requires you to be on a full gluten diet!  

As some with celiac disease, autoimmune Gastritis and Hashimoto’s, depression and anxiety can occur if any of them are flaring (active).  Many celiacs suffer from allergies and various intolerances unique to each individual.  Remember too that celiac disease can share the same symptoms as other illnesses like Crohn’s.  Those should be ruled out.  

Finally, you might try the Autoimmune Paleo Diet (is also gluten free), if you can not access a Gastroenterologist.    It has claimed to have helped those with various autoimmune disorders.  Certainly testing out food for the short term can not be harmful.  A small study was done at Scripps in San Diego with Crohn’s and Ulcerative Colitis patients.  Within six weeks (no change in medications) they achieved a 73% remission.  That is amazing!  Now they are testing Hashimoto’s patients.  Again, very tiny studies.  Here is USA government publication: 

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5647120/

Here is more about the Hashimoto’s study.  Of course no company wants to support food as a cure, so this group crowd funded:

https://autoimmunewellness.com/aip-hashimotos-medical-study-results/

 

 

Edited May 4, 2019 by cyclinglady

[Ennis-TX]

Ditto cycling lady on everything, and more so on the paleo diet.
If you get done with testing, full gluten diet, and scopes, I would suggest a the Paleo Auto Immune diet or at the very least a paleo diet.
If you have one Autoimmune issue your highly likely to have more. I treat my Celiac, and UC with a paleo diet and even took it to keto macros with low carb and high fat/protein to get it all under control. Funny how I was forced to move to the diet with lactose intolerance, then celiac, followed by corn and whey allergies then pancreas issues resulted in me not handling carbs.

Everyone is different with their issues, after the diagnosis process, start keeping a food diary and do a elimination diet. Build your new safe food menu around what works and eliminate what makes you feel bad.

To this day I still feel better supplementing B-vitamins, Vitamin D, Magnesium, and taking CBD/Hemp and pumpkin seed protein to regulate my system for best mental performance. Again everyone is different and finding what works for you might take some time but can help eliminate fog, and increase your ability to function more normal.

[radley]

Thanks for your replies cyclinglady and Ennis, I'll try sticking to Paleo*. Btw, I got endoscopy done a couple of years ago and there WERE some lesion-like changes in my intestines which to me prove some kind of reaction, most likely to wheat. But they just tested for helicobacter which was negative. I'll go listening to my body feeling better without grains. Apparently my wheat-intolerance reaction is mild as I was able to improve while living with gluten-eating people as I just skipped flour and baked goods and opted for rice cookies for sandwiches... and that did the job.

*As for following a Paleo diet, I think it's good but for my case (weak adrenals) I'll add rice and potatoes. If you don't go overboard with them, they're a fine way to not lower your carbs too much. I'm corn intolerant, so most gluten-free breads are out & veggies are just not enough. When I went strictly Paleo + keto it was too extremely low carb for me. That lowered my usually high cortisol, but then it became so low the Drs even put me on cortisol tablets! I also developed hyperinsulinemia, resulting in unstable blood sugar issues (and a pumping feeling after each meal). I avoided carbs but I started having high insulin reactions even to protein and fat, it was scary. :/ 

I guess if you already have adrenal fatigue keto is not that good, but Paleo + potatoes & rice works fine.  For my pancreas I take a low dose Metformin as it improves insulin sensitivity and makes my pancreas not pump excessive amounts. I sometimes skip it but it seems to have almost reversed my insulin insensitivity.

[Ennis-TX]

1 hour ago, radley said:

Thanks for your replies cyclinglady and Ennis, I'll try sticking to Paleo*. Btw, I got endoscopy done a couple of years ago and there WERE some lesion-like changes in my intestines which to me prove some kind of reaction, most likely to wheat. But they just tested for helicobacter which was negative. I'll go listening to my body feeling better without grains. Apparently my wheat-intolerance reaction is mild as I was able to improve while living with gluten-eating people as I just skipped flour and baked goods and opted for rice cookies for sandwiches... and that did the job.

*As for following a Paleo diet, I think it's good but for my case (weak adrenals) I'll add rice and potatoes. If you don't go overboard with them, they're a fine way to not lower your carbs too much. I'm corn intolerant, so most gluten-free breads are out & veggies are just not enough. When I went strictly Paleo + keto it was too extremely low carb for me. That lowered my usually high cortisol, but then it became so low the Drs even put me on cortisol tablets! I also developed hyperinsulinemia, resulting in unstable blood sugar issues (and a pumping feeling after each meal). I avoided carbs but I started having high insulin reactions even to protein and fat, it was scary. ?

I guess if you already have adrenal fatigue keto is not that good, but Paleo + potatoes & rice works fine.  For my pancreas I take a low dose Metformin as it improves insulin sensitivity and makes my pancreas not pump excessive amounts. I sometimes skip it but it seems to have almost reversed my insulin insensitivity.

Yeah certain diabetics can not do low carb, no one with T1 and some T2s have issues. Thing is your need the pancreas to produce the Glucagon hormone the body to break down fatty acids into glucose.
Paleo diet, sweet potatoes are the primary carb source. And they are much easier on the body then white potatoes.
I am a bit lucky, keto works for me, thing is if I eat a few forks or potatoes I was seeing spikes into the 400s on the glucose monitor at times.

[cyclinglady]

As a celiac and some who is managing type 2 diabetes (insulin resistant), I have come to realize that there is no “one-size-fits-all” diet for either.  We all have different intolerances, additional illnesses and our bodies respond to so many different environmental issues and in different ways.  What works for me, may not work the same for you.   I wish there was an easier way to determine an individualized diet instead of just trial and error.  

[Posterboy]

On 5/19/2014 at 2:51 AM, radley said:

Could I be gluten-tolerant? Do you think my issues might have been caused by the processing of most packaged foods or having Crohn's or IBS rather than gluten? Could it be that gluten foods made my gut feel worse because I had IBS in the first place, but I am not allergic to it? Do you think I should do a third blood test in a different lab? I live in Eastern Europe now so Celiac is almost unheard of over here.

Radley,

Here is a recent article on celiac.com that might help you.

Also see this fairly recent research that shows the Amino Acid Tryptophan is important in the pathogenesis of IBS.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4266036/

Here is a nice livestrong article that explains how to get more Tryptophan rich foods in your diet.

https://www.livestrong.com/article/247974-list-of-foods-high-in-tryptophan/

I hope this is helpful but it is not medical advice.

Posterboy,