GFD helping, should I get tested?

[Lionheart]

Hello all! Thank you in advance for responding to this message. I have only recently come to the consideration that I might be celiac, but I’ve been on a gluten-free diet for three weeks now, and have seen improvements, and don’t want to go back to eating gluten to do the test. Lol. So I’m hoping if I describe my experience you all can let me know if it sounds familiar. I’ve been reading some of your posts here and in the newbie section. It seems that it might be celiac, especially the “flu like symptoms” descriptions.Thank you again for any advice. 

OK. So here’s my story. I am a 55 male 175 pounds in reasonably good shape. I eat healthy and balanced and exercise almost every day. My symptoms began many years ago when I started getting pain in my stomach. And what I mean by that is sharp, stabbing pain. I was diagnosed with GERD, but I didn’t have any of the other symptoms, such as burning in the esophagus or reflux, or getting worse when you lay down. Nevertheless, I was put on omeprazole, and I’ve been on it ever since. It has helped with the pain, but occasionally some days will be more painful than others, and I don’t know why. Around that same time I tested positive for a lot of environmental allergens such as tree pollen, grass pollen mold dust mites. Not sure if that’s relevant, but thought I would throw that in there. For as long as I can remember I’ve always had to wipe a million times when I went to the bathroom. So, having loose/soft stool seemed normal to me. I did not know that it was abnormal until much later. I am notorious for backing up toilets lol.

So fast forward a while, I notice that I started to get sick quite often. I thought that my symptoms may have been from all the environmental allergies, but now I think it may have been some thing different. Here are my symptoms.

On most days, I seem to have a varying degrees of dizziness and slight nausea and slight weakness (feel fatigued easily). And loose stool as I mentioned ( always loose, I could count on my hand the number of times that I have been constipated, and I have never had to take medicine to relieve it. Same goes for firm stool lol. Every day = loose to varying degrees. 

Then, seemingly randomly, I will then go through what I will call “episodes”. My whole body will ache. I’ll feel irritable or grumpy. I’ll have varying degrees of nausea, dizzy/lightheaded (especially when, standing up, bending over, or going from a laying position to a standing position), brain fog/trouble focusing (to the point where I cannot tell you my phone number), weakness and fatigue. The only thing I seem capable of doing was laying in bed. This would come on, sometimes suddenly sometimes slowly. Sometimes lasting a day, sometimes lasting many days. I had no other signs of a cold or flu, like cough, congestion, sneezing, sore throat, none of those, but always felt like I had the flu. This is actually what drew me to ask this question to this group, because I have described these episodes as being like having the flu, even though I went to the doctor and was tested negative for the flu. I really don’t know what triggers these events. The only thing that seems to help any of this is Advil. But it only does the symptoms does not relieve them.

As for testing, I’ve been through all of it, even recently, all normal blood work came back except I came back with a very low allergy to wheat. (.14 on the IgE blood test). Long ago I went through all kinds of other tests, but nothing was ever figured out. In the past I’ve been on gluten-free diet, dairy-free diet, and keto but only for a few weeks at a time, and not faithfully. It did help some, which what led me back to it. 

So does any of this sound familiar? As I mentioned at the top, my doctor has offered to do the celiac blood test, but I understand that I need to be on a gluten diet to do that. I really don’t want go back as I have seen some improvements in mood, energy, weakness, fatigue, and dizziness, but my stool remains the same.

I am also wondering if there is a benefit to having a diagnosis of celiac disease on your medical record. If I suspect it, and I stick to a gluten-free diet and it works, is there a point for me to go in through testing? Thank you for your honest opinion here.

Thanks again for reading through this and any information you have!

May you face this with bravery, 

Lionheart 

[Scott Adams]

If you can stay on a gluten-free diet without a formal diagnosis, then you may wish to forgo further testing, especially if your symptoms go away on the diet. Some people want a formal diagnosis to help them stay on the diet.

Your symptoms definitely could be caused by either celiac disease or non-celiac gluten sensitivity--approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely indicate that you have one of these issues.

My symptoms were very similar to yours, especially the dizziness and nausea, but I also had panic attacks and severe diarrhea.

IgE allergy tests would not determine whether you had either condition--any chance you had other blood tests like a celiac disease blood panel? Obviously there is no way to be certain without testing, but in the end, whether it is NCGS or celiac disease, the treatment is the same--a gluten-free diet. 

 

[Wheatwacked]

Hi Lionheart, welcome to the forum,

Yes your story is all too familiar.  In the US there is no real advantage to an official medical diagnosis.  It may in fact cause increased insurance premiums as a pre-existing condition. What Scott said.

1 hour ago, Lionheart said:

The only thing I seem capable of doing was laying in bed.

I did that for two years, aspirin let me lie quietly, eyes closed. 800 mg advil 3 times a day (max prescription dose) let me lie still and watch TV.  I couldn't stand for more than 10 minutes, if I didn't move my head for 5 minutes I had to use my hands to move, my neck would lock up.  I ended up on prednisone, to function.  That was one of the nineteen symptoms that eventually improved just on gluten free. On gluten free diet Prednisone was reduced from 30 mg a day to my current 5-10 mg a day.  Those two years on pred before gluten free caused secondary adrenal insufficiency, Adrenal cortex shut down, so I'll likely need to take maintenance prednisone forevere.    63 when I started gluten free.  Had I started gluten free before the pred, I would'nt have needed it, but no regrets. But it kept me alive long enough to accept that gluten was killing me.  I was diagnosed at 21 with Benign Prostate Hypertrophy.  It resolved in a few months at age 63 on the gluten free diet and real folate instead of folic acid that is added to grains.

Most of the symptoms come from the malnutrition caused by Celiac Disease malabsortion syndrome, or food avoidance.  I'll give the short answer that is most likely to help you recover.

1 hour ago, Lionheart said:

having loose/soft stool seemed normal to me

Insufficient Choline.  fat digestion, Aceltycholine, bile, mitochondria membrane, deficiency causes non alcoholic fatty liver disease. also can improve brain fog, energy. work based on the NHANES datasets showed that only around 11% of American adults achieve the Adequate Intake for choline.  80  

 

1 hour ago, Lionheart said:

started to get sick quite often

Vitamin D. Vitamin D Is Not as Toxic as Was Once Thought; Vitamin D and the Immune System

 

• A lifeguard study that found vitamin D levels in the 70 ng/mL range up to 100 ng/mL (nature’s level) were associated with no adverse effects;
• Data in patients with breast cancer showing a reduction in the incidence of new cancer with postulated 0 point at 80 ng/mL;
• Colon cancer data showing a reduction in the incidence of new cancer (linear) with postulated 0 point at 75 ng/mL;  https://www.healio.com/news/endocrinology/20120325/surge-of-information-on-benefits-of-vitamin-d-but-no-interventional-trial-data-exist-yet-to-ensure-s

1 hour ago, Lionheart said:

I seem to have a varying degrees of dizziness and slight nausea and slight weakness

Thiamine deficiency.  Dry beriberi can damage the central nervous system (CNS). It disrupts motor functioning (the movement of the muscles). It can also cause impaired reflexes and numbness in the extremities, 

Here is my current list of vitamins and minerals, each has multiple functions and only takes a few days to kick in.

• 10,000 IU vitamin D to control autoimmune.
• 500 mg Thiamine - neurologic symptoms
• 500 mg Nicotinic Acid - increase capillary blood flow
• 500 mg Pantothenic Acid - creates energy from glucose Krebs Cycle
• 1000 mcg B12 - creates hemoglobin for oxygen transport
• 500 mg Taurine - essential amino acid, a powerful antioxident that we make indogenously so it is officially labeled "Conditional Essential" as Choline used to be, but not enough when sickness increases inflammation. reduces Reactivite Oxygen Species (ROS are are free radicals.).
• 840 mg Phosphatidly Choline x 3 - essential for fat digestion, gall bladder, liver, brain fog, cell membranes, prevent congenital spinal defects (along with B6, B12, folate, Taurine.
• Iodine - muscle tone, testosterone, hyper and hypo thyroid, slow healing.  I eat Nori and Kelp

 

[Lionheart]

Thanks for the replies. I had the same thought about, from an insurance standpoint, notting have an official diagnosis might be wise. 

I saw an allergist yesterday and he educated that the main symptoms I was having were not caused by an IgE reaction which ruled out the wheat allergy I thought I might have had.  

While reading more on celiac, I discovered that DH can appear on the scalp and that clicked. I have had what I always though were pimples on the back of my neck, on the hairline. I have never thought anything of them until now when I saw that picture. 

So I guess my next question is is having DH, along with most other common celiac symptoms (gerd, delayed lactose intolerance, brain fog, dizziness, cramping, loose stools/diarrhea, body aches, fatigue and weakness), enough to make the call? Lol. Or stated another way, do most people who have DH also have celiac?

 

 

[Scott Adams]

Having most or all symptoms go away after going 100% gluten-free for several months to a year would likely indicate non-celiac gluten sensitivity at the least, and possibly celiac disease/DH.

[Lionheart]

Thank you. Is DH common in NCGS, or mostly only those with celiac disease? 

[Scott Adams]

I haven't seen studies done on whether or not DH is related to NCGS. It is considered the skin manifestation of celiac disease by the medical community, so it is considered to be a form of celiac disease. 

This article may also be helpful:

 

[Lionheart]

Thanks, Scott. 

One more question for you, does oat sensitivity only occur in celiacs? I had been eating oats (Bob's gluten-free and Costco's One Degree gluten-free sprouted oats) until just a few days ago. When I stopped, my symptoms got much better to the point where I am almost symptom free. I held out since I love oats and thought they were adding bulk to my stool lol. Wrong. Once I cut them my stool is formed. 

Does this level of sensitivity to gluten-free oats mean anything for a celiac vs NCGS diagnosis? 

[Scott Adams]

Researchers have identified oat sensitivity as separate from celiac disease, so people without celiac disease can also have this, however, it seems to be more prevalent in those with celiac disease. I've not seen any research done on oat sensitivity in those with NCGS, but it's likely that those with NCGS can also have it.

PS - If you want to dive into research articles on oats and celiac disease, they are in this category:

https://www.celiac.com/celiac-disease/oats-and-celiac-disease-are-they-gluten-free/