Is this really just Gluten Sensitivity?

[DrubNonie]

Hey all,

 

Kind of a long story. Few month journey here, 21 year old college student, male. On May 3rd, 2017 i encountered a random case of fatigue and a very stiff shoulder and neck on the right side. These symptoms very quickly progressed within hours into face tingling and hand tingling. I went to an urgent care and was given Perdnisone, which I took for two days and felt awful on. During the inital two days, my initial symptoms began. Tingling all over the body, back pain, fatigue, brain fog etc. As the weeks progressed I went to see many a doctors that were mostly dumbfounded and were thinking it was all in my head. I had a CT Scan, MRI with contrast of brain, MRI no contrast neck, all with no results. During these few months, i encountered many a symptom outside the pain and tingling. What started soon after these symptoms was persistent eye burning(that the opthamologist saw nothing of note when i visited them), horrible concentration and slowed reading(that has slowly improved, but more on that later), ears clogging up, tinnitus, and after my tingling had subsided after a month-I started to have awful pains in my back, knees and shoulders. I also developed a rather strange oral function, where i kept having excess foamy saliva making talking very weird, almost like i was straining to talk.  It was only after about 6 weeks of this that stomach issues reared their ugly head in. I remember the first night it happened, I had pretty painful bloating that quickly changed my normal bowels into constipation. When this initially occurred, I had bladder pains and painful urination, as well as testicle pain to boot. I saw my primary care doctor after this and was put on Levaquin for 5 days.  Also during this time, I would develop lymph nodes under my right arm pit, which again no doctor could really seem to understand. This resolved the pain in the bladder but kept the constipation. The doctor also sent for a urinary culture test as he tested for blood in my urine and there were traces of it. I was recommended at this time to set up an appointment with a GI, which took me about 3 weeks to get(the first I would see the GI would have been at the start of July).

 

So about seven weeks at that point, the joint pain had gotten very bad. I had issues concentrating and I was just rather miserable. The constipation was relentless, and the eye burning wouldn't stop. I went to go see a chiropractor for the hell of it since my condition had not been diagnosed yet, and it would take a whole month before my endoscopy would take place. It turns out chiropractic care really helped resolved the joint issues, and minimized them down to about 5% of the pain. However, the eye burning, constipation and fatigue/brain fog stayed constant. I eventually was recommended to see a "Neuro" Chiropractor to help work with the brain fog, which upon visiting him, i received short term relief from not only the burning eyes but also brain fatigue. Alas, constipation remained constant over the month. The adjustments only provided temporary relief to the burning eyes and fatigue, and they very much come and go with about the same frequency still. At this point, i was still very concerned as no one could really tell me what the heck was going on with me, and many doctors were claiming it was just anxiety, which I honestly wish it was at that point, but something still felt weird and not right. Fast forward to many blood tests later, my GI calls me and tells me he believes I have celiac. Ok. So Endoscopy last week.

 

After the upper endoscopy I was told I as "Gluten intolerant/sensitive" and that there was inflammation in intestines. I haven't seen the blood work yet as my doctor is on vacation, but will ask for it upon his return. in the mean time, the doctor has told me to go on linzess(which I have yet to take yet) for constipation and to start a gluten free diet. I have started the gluten free diet so far with only the intent to cut out things explicitly gluten, it has been a week and my bowels are slowly opening up with more frequency. I have also been taking prunes to try to fight the constipation, and while working, the stools are very hard and infrequent. Of course its only been a week, so I'll see how it progresses. So far I have felt less fatigue in just a week, but as of today I had a weird episode of not fatigue, and not a typical anxiety attack either, but a weird feeling of malaise that left me very uncomfortable and able to think. I avoided gluten over the last week, but i was at a friends house for dinner last night and had grilled chicken wings, I'm not sure if cross contamination could have occurred.

 

Since im a newbie and hopelessly lost(and im not even sure if this is the right place to post this), do you believe this could all be caused by gluten intolerance and not any other condition? Even the lymph nodes and burning eyes? I've looked online and seen possibilities for candida and lyme, but I'm just not sure where to go from here to get treatment. The chiropractor has helped with the joint pain but everything else is still recurring at a pretty constant rate(Burning eyes, excess foamy saliva, constipation etc.). If anyone would be kind enough to offer assistance, what do you think of this whole situation?

 

Best Regards and thank you. 

[Ennis-TX]

Yes NCGS (Non Celiac Gluten Intolerance) can have similar if not EXACT symptoms as celiac. Could it be other things....with the constipation and stuff? Did they check your colon? Heck they found Ulcerative Colitis in my in addition and it has some bad stuff also.

Thoughts look into Magnesium Citrate Supplements for the constipation. Natural Vitality Calm, start off 1/4 tsp a day once or twice a day slowly up the dose to the full dose over 1-2 weeks or to where you get comfortably BM. If it proves too harsh for you after a week change to Doctors Best Magnesium. These will solve many of your issues.

As to fatigue, eyes, stress and everything else look at B-vitmains Liquid Health Stress & Energy and the Neurological support from the same company are life savers.

Check out the newbie thread  and I have a post with some gluten-free food alternative many find useful, I also have quite a few simple recipes in the cooking section.

We suggest a whole foods only diet no processed foods, no dairy, and no oats for the first few months to jump start the healing, a food diary will be your best friend during this and after for finding any other foods that might bother you.

https://www.celiac.com/forums/topic/91878-newbie-info-101/

https://www.celiac.com/forums/topic/117090-gluten-free-food-alternatives-list/

OH I was writing up a thing last month on NCGI and I know some other members can help out to but this is what I got for helping someone else identify it.

1. Acne, Flushed Skin, or Rashes
Non-Celiac Gluten Sensitivity can manifest itself as a chronic skin condition such as a rash, acne, or red/flushed cheeks, but these conditions could also be hormonal. On the other hand Celiac disease also has Dermatitis herpetiformic or DH, which is characterized by rashes and chronically itchy, elbows, knees, buttons, and back.

2. Distended Stomach or Bloating
A distended or bloated stomach applies especially after gluten consumption and is a fairly clear sign of gluten sensitivity. A distended stomach is also characteristic of malnutrition as well of celiac disease.

3. Diarrhea, Gas, or Constipation
These three  symptoms can simultaneously occur after eating gluten and may be a sign of intolerance because,especially the former, is a way for the body to expel harmful allergens or other substances. Often, diarrhea(frequent loose or liquid stools) occurs with gas, resulting in a “feeling of a full or tight abdomen” as put by the NFCA. Constipation, essentially the antithesis of diarrhea, is also a symptom of non-celiac gluten sensitivity and is characterized by infrequent, hard, painful bowel movements from lack of physical activity or poor diet,namely a diet high in refined carbs rich in gluten. This can be made worse if one has a magnesium deficiency, does not get though hard fiber, or drink enough water. All of which can be made worse by the feeling of bloat/gas making one feel too full to need to drink or eat high fiber foods.

4. Brain Fog or Migraines
Brain fog is a major characteristic of non-celiac gluten sensitivity. Chronic or debilitating migraines goes hand in hand with the idea of brain fog and results in depression or irritability. These again can be made worse by deficiencies, like B-vitamins.

5. Joint Pain or Numbness in Extremities
Tingling, pain, or numbness in the joints or extremities is abnormal and should be a clear sign of a health problem like gluten intolerance or celiac disease. Colloquially, this tingling is described as “pins and needles” or a limb being “asleep.” If this happens frequently for no apparent reason, it could be a sign of gluten intolerance. Again these can help be alleviated and be made worse by deficient in Magnesium, B-vitamins

Total elimination of the gluten protein for an extended period of time, say two weeks or a month, is the only true way to identify if these symptoms are linked to gluten intolerance, and even then, it would not be certain. If the protein is eliminated and any of the above symptoms dissipate, then it should be noted that gluten intolerance may be an issue, but be sure to consult a professional for solid proof.

[tessa25]

I'm no doctor, but if I were you and the celiac blood tests come up negative I'd definitely get tested for Lyme disease. Might not be a bad idea to do it anyway if you've been near ticks this summer.

[cyclinglady]

I agree with Tessa.  This came up pretty fast.  I would ask to rule out Lyme  Disease and get copies of the celiac blood panel.  Are you sure you got the complete panel?  What were the biopsy results?  Intestinal villi damage needs to be reviewed by a pathologist.  My own endoscopy was visually normal, but my biopsies confirmed a celiac diagnosis.  

celiac disease experts usually do not recommend the gluten-free diet until all testing is complete.  That includes waiting for results that might get lost, etc.  

if celiac disease is really ruled out, you can try the diet.  But....find out what is causing your issues!  

[DrubNonie]

Hey all! Thank you so much for your responses! I was actually tested for lyme back in June by lapcorp and it came back negative. I understand there is controversy over the lyme disease debate however.I also forgot to mention another symptom-when i wake up in the morning i have pain in my thumbs thats almost arthritis like. it goes away throughout the day, but it gets worst upon waking up. 

 

I only started the diet because my GI doctor ordered me too right after the endoscopy. I am seeing him on the 15th before going back to college and ill ask for all my results then. he is on vacation still. Thanks again for all the advice. So far, going gluten free for a week has resulted in less fatigue but thats about it. Burning eyes, painful thumbs in morning continue. Again, my doctor said it wasn't celiac but he said it was non-celiac gluten sensitivity, Any other ideas or should I just wait now for the doc? 

[Celiac's Wifey]

Hey,

Sorry you are feeling awful.

I have been researching symptoms like crazy , because one of my kids had contradictory testing, but has a lot of autoimmune symptoms and a strong family history of celiac/dh and related autoimmune disorders and we are trying to get to a figure out what is going on (and to hopefully prevent further damage!)

Anyway, saw this and thought you might find it helpful:

Open Original Shared Link

Quote

A recent study found that some people with celiac disease had neuropathic symptoms before the gastrointestinal symptoms of celiac disease appeared. The results of this study, and the fact that 10 percent of people with celiac disease suffer from an associated neurological condition (usually peripheral neuropathy (numbness and tingling) or ataxia - a condition characterized by jerky, uncoordinated movements and gait), indicates that patients with neuropathy of an unknown cause should be tested for celiac disease.

From everything I've read, the numbness/ tingling you describe could well be consistent with celiac disease.

So could the extremely dry eyes and the arthritis - many celiacs also have other autoimmune complication - including some that cause dry eyes (sjogren's syndrome for example.) There are also many different studies that link and patients who report types of joint pain, etc.

You should also know that steroids, including prednisone, can potentially negate your celiac blood panels. (They suppress immune response and can mess with your antibody levels.)

I obviously don't know what your testing showed, but if it isn't celiac, you may have other autoimmune symptoms occurring? But I would definitely ask your doctor to explain clearly what he saw - including classifying the 'inflammation'. If  you have damage showing in your intestines - even mild - that's pretty suspicious. and your doctor said to go gluten free, maybe ask him why he is calling it gluten sensitive instead of celiac? 

From my experience, and some good advice I got here, I would also suggest that you read more posts here and skim any studies/ diagnostic guidelines you can before your appointment so that you can try to get answers to the questions you need before leaving the docs office. You should also insist on paper copies of all your labs and biopsy results in paper copies (in the U.S. you have a right to them under hippa) for future reference and incase your need a second opinion or follow ups with different doctors.

We have a follow up the 15th for my daughter, too.

Good luck!

 

[Bgwg]

B-12 deficiency can cause fatigue and nerve damage.

honestly though, you will need to provide more of a history....

 

alcohol / drug use?

STDs ruled out?

Any Possible exposures to toxic chemicals in your home, at work/school etc.?

Active in sports, any recent accidents or injuries?

What if any medications/supplements are/were you taking (before all the issues)?

Recent travel?

[squirmingitch]

On 8/3/2017 at 8:14 PM, DrubNonie said:

Hey all! Thank you so much for your responses! I was actually tested for lyme back in June by lapcorp and it came back negative. I understand there is controversy over the lyme disease debate however.I also forgot to mention another symptom-when i wake up in the morning i have pain in my thumbs thats almost arthritis like. it goes away throughout the day, but it gets worst upon waking up. 

 

I only started the diet because my GI doctor ordered me too right after the endoscopy. I am seeing him on the 15th before going back to college and ill ask for all my results then. he is on vacation still. Thanks again for all the advice. So far, going gluten free for a week has resulted in less fatigue but thats about it. Burning eyes, painful thumbs in morning continue. Again, my doctor said it wasn't celiac but he said it was non-celiac gluten sensitivity, Any other ideas or should I just wait now for the doc? 

You don't have to wait to see the doc in order to get copies of your blood work as well as endoscopy & pathology results if you're in the US. Just request them from the office. Is the docs entire office closed down? That would be the only reason you can't get those copies while the doc is on vacation. In the US, you have the right to copies - it's the law.

[DrubNonie]

Hey everyone-

 

Thanks for the replies! As for B12 and other autoimmune disorders, my blood tests all came back normal/negative. 

 

As for drug/alcohol use, I smoke weed about 2-3 times a month. In terms of alcohol, I only got drunk once. Weird enough, my symptoms started about 3 days after that. My initial onset of symptoms were the stiff neck, fatigue, and "intoxicated" speech.I never felt like that again(in terms of speech) but it was strange. 

 

All STD tests have come back negative. I was on no meds prior to this episode, and in terms of toxic environment, the college dorm i was staying at had Black Mold in the shower for months. I do not know if that could have affected me. 

 

I will say the symptoms haven't stopped yet after going "gluten" free(I haven't left dairy yet) Constipation and ADHD like symptoms are very present, my concentration is very flakey some days and i use the wrong words far more than i usually. do. I am an avid reader so my reading speed slowing down to this extent confuses me.   Fatigue is still present but much less severe. The burning eyes were resolved with the neuro chiropractor after doing a sinus adjustment, after my sinuses opened up the burning eyes subsided. The excess saliva/mucous however is still present. I believe the burning eyes and filled ears are most likely mucous, and perhaps come from an allergy? It has gotten better since adjustment. 

 

Thanks for all your replies and answers! 

[Ennis-TX]

1 hour ago, DrubNonie said:

In terms of alcohol, I only got drunk once. Weird enough, my symptoms started about 3 days after that.

LOL I had minor symptoms all my life getting worse and worse with constipation lasting 5-11 days, fog, sluggishness, no energy, I slept almost all the time, etc. MY Neurological issues hit after drinking like crazy one new years, the shock to the immune system can activate the genes for celiac and make the body start creating antibodies to fight the gluten proteins. This is made much worse if gluten was in your system when the shock happened. NOTE this is just one of the many theories why some of us with the gene have it just all of a sudden hit. Many have some kind of life event trigger it. Your the third person other then me who did it with alcohol.....my poison was 23-26 shots of hard liquor in a few hours....

[DrubNonie]

It could be possible. I drank saki which is rice wine. I had minor constipation all my life. The constipation disappeared when I went paleo for a year, but came back when i went off of it. However, smoking weed normalized my bowels for several months. Like the most normal and healthy bowels i had in my life. After the drinking incident and onset of symptoms, the weed still helps me immensely with bowel movements, but they arent as smooth. I am not sure if it is because my intestinal track has been hurt by the gluten. 

[Victoria1234]

13 hours ago, Ennis_TX said:

LOL I had minor symptoms all my life getting worse and worse with constipation lasting 5-11 days, fog, sluggishness, no energy, I slept almost all the time, etc. MY Neurological issues hit after drinking like crazy one new years, the shock to the immune system can activate the genes for celiac and make the body start creating antibodies to fight the gluten proteins. This is made much worse if gluten was in your system when the shock happened. NOTE this is just one of the many theories why some of us with the gene have it just all of a sudden hit. Many have some kind of life event trigger it. Your the third person other then me who did it with alcohol.....my poison was 23-26 shots of hard liquor in a few hours....

How were you even alive after so much alcohol? My nephew actually died from approximately 20 shots (we had to estimate from his blood alcohol level).

[Ennis-TX]

5 hours ago, Victoria1234 said:

How were you even alive after so much alcohol? My nephew actually died from approximately 20 shots (we had to estimate from his blood alcohol level).

I  think I did a little, I felt like I was outside by body controlling myself with strings, really freaky. TOTAL loss of time but I know at some point I ended up in the bathroom....Toilet was full of dark red blood and black liver bile, I know I took pictures of it, texted out a will to a friend and spent who knows how long in that bathroom.....that was a new years I regretted ....I have a picture of the line up for that night....I posted it would be a good night.....like hell. December 31st, 2013...the night part of me died

[Victoria1234]

6 minutes ago, Ennis_TX said:

I  think I did a little, I felt like I was outside by body controlling myself with strings, really freaky. TOTAL loss of time but I know at some point I ended up in the bathroom....Toilet was full of dark red blood and black liver bile, I know I took pictures of it, texted out a will to a friend and spent who knows how long in that bathroom.....that was a new years I regretted ....I have a picture of the line up for that night....I posted it would be a good night.....like hell. December 31st, 2013...the night part of me died

Wow I feel icky just looking at that pic. Last time I drank heavily was over 30 years ago and I can still remember how bad I felt.

your outer body experience sounds like something out of a creepy movie, very scary.

[DrubNonie]

Hey all-

 

Just saw my GI and got my blood work back. So turns out most bands were negative, but my t-Transglutaminase band was positive. It came out as 25 from labcorp and a positive was anything greater than 9.  Everything else came back negative. My biopsy was also considered negative. The GI still felt due to my symptoms and blood work that this could be classified as celiac disease. 

 

Constipation has improved,  but ADHD-esque symptoms are unrelenting. Same with excess mucous, not sure if leaving the system. What do you all recommend from here? Just stick gluten free? 

[DrubNonie]

Hey Guys!

 

So been gluten free for a total of 10 days now, now that I've worked out what is and isn't gluten(Soy sauce got me...lol). My sinuses and ADHD have improved greatly. Constipation is still going strong sadly, and a new array of symptoms came back! Tingling in general, but burning in the head and ears and neck. The burning sensation seemed to have come from no where. Also,it seems theres a pressure in my head constantly and my vision seems....i don't know..not normal but not worse? It  just seems my perception is different. The burning in my head concerns me, and I was wondering, is this normal after quitting Gluten? Is this my body resetting itself and I should just wait or should I see a doctor for the burning and tingling? 

 

Best Regards 

 

[Ennis-TX]

2 hours ago, DrubNonie said:

Hey Guys!

 

So been gluten free for a total of 10 days now, now that I've worked out what is and isn't gluten(Soy sauce got me...lol). My sinuses and ADHD have improved greatly. Constipation is still going strong sadly, and a new array of symptoms came back! Tingling in general, but burning in the head and ears and neck. The burning sensation seemed to have come from no where. Also,it seems theres a pressure in my head constantly and my vision seems....i don't know..not normal but not worse? It  just seems my perception is different. The burning in my head concerns me, and I was wondering, is this normal after quitting Gluten? Is this my body resetting itself and I should just wait or should I see a doctor for the burning and tingling? 

 

Best Regards 

 

Burning, tingling skin and constipation are signs of severe magnesium deficiency, For me the burning felt like hot patches of needles being drove into my skin in a wavy pattern. I initially started off taking Epson salt baths then moved to oral supplementation.  Natural Vitality Calm if you can, it is a magnesium citrate, can be a bit harsh on your gut and you have to start dosing small, 1/4tsp once or twice a day and slowly up the dosage over 1-2 weeks til your can have a comfortable bowl movement. There is a adjustment period to this with your gut. If it proves too harsh then Doctors best Magnesium, but it will not help so much with the constipation.