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Symptoms of celiac or something else?


Platinum

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Platinum Rookie

I'm still trying to figure out this whole "celiac" thing... Since going gluten free parts have gotten better. My appetite has returned (but with a vengeance) and I don't feel so nauseous and haven't had too many other issues digestion. But I've been feeling very fatigued all the time. I can never get enough rest but can never seem to actually relax either. I've had horrible headaches and migraines since starting gluten-free diet. And I've noticed I have souch more pain through out my entire body. My joints feel like they are on fire and my muscles ache constantly. I feel bruised from head to toe. I've had terrible brain fog and can't seem to concentrate on the smallest tasks. Is this normal for everyone? 

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Posterboy Mentor

Platinum,

Magnesium can help your chronic fatigue.

Here is the National Institute of Health's Fact sheet on Magnesium.

Open Original Shared Link

find a Magnesium Citrate or Magnesium Glycinate and your body will think you with increased energy, muscle cramps that disappear as if by by magic and vivid dreaming will replace your fatigue.

quoting from the NIH.

Groups at Risk of Magnesium Inadequacy

"Magnesium inadequacy can occur when intakes fall below the RDA but are above the amount required to prevent overt deficiency. The following groups are more likely than others to be at risk of magnesium inadequacy because they typically consume insufficient amounts or they have medical conditions (or take medications) that reduce magnesium absorption from the gut or increase losses from the body.

People with gastrointestinal diseases

The chronic diarrhea and fat malabsorption resulting from Crohn’s disease, gluten-sensitive enteropathy (celiac disease), and regional enteritis can lead to magnesium depletion over time [Open Original Shared Link]. Resection or bypass of the small intestine, especially the ileum, typically leads to malabsorption and magnesium loss [Open Original Shared Link]."

 It is estimated almost 75% of us are low in it and we don't know it.

we are said to wast away without enough Magnesium. 

Magnesium is needed for animals the way chlorophyll is needed by plants to make energy.

People who have low stomach acid can have trouble absorbing enough Magnesium from their food.

see this thread where some of these things are summarized.

you might also want to have your Vitamin D levels checked.  I was low in  Vitamin D when I received my NCGS/Celiac diagnosis.

I hope this is helpful.

****this is not medical advice I only know it helped me.

  2 Timothy 2:7 "Consider what I say; and the Lord give thee understanding in all things." this included.

Posterboy by the Grace of God,

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trents Grand Master

How long have you been gluten free? There can be an adjustment period, sort of withdrawal, after going gluten-free. May we ask your relative age? All of the things you describe have been associated with Celiac disease but usually not all at the same time. Have you been tested for rheumatoid processes and fibromyalgia? 

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Platinum Rookie
13 minutes ago, trents said:

How long have you been gluten free? There can be an adjustment period, sort of withdrawal, after going gluten-free. May we ask your relative age? All of the things you describe have been associated with Celiac disease but usually not all at the same time. Have you been tested for rheumatoid processes and fibromyalgia? 

I've been gluten free since December. I was diagnosed with Celiac's in January. I'm 24 and no I haven't yet. I planned on asking my doctor more about it my next visit. But thought maybe I could try to get some answers here first to make sure I'm not worrying for nothing. 

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Ennis-TX Grand Master
2 hours ago, Platinum said:

I've been gluten free since December. I was diagnosed with Celiac's in January. I'm 24 and no I haven't yet. I planned on asking my doctor more about it my next visit. But thought maybe I could try to get some answers here first to make sure I'm not worrying for nothing. 

The whole cramps, fatigue, never feeling rested or being able to rest match with magnesium deficiency. Do you have daily bowel movements? Constipation, If yes then use Natural Vitality Calm start with small 1/4tsp dose and slowly up it to the full 2 tsp or you get loose stools then back it back down, dosing to tolerance, a scare and going by grams is useful. If you do not have constipation then use Doctors Best Magnesium the powder is a glycinate just take 1 scoop a day in the evenings you will find you relax and sleep much better and the aches will go away.
Both me and posterboy found our salvation from many issues in magnesium

You might also as mentioned want to get your vitamin D checked but other common issues are full B-vitamins, since they work together you need a complex, this can help with energy and fog. I use Liquid Health Stress & Energy and the Neurological Support from that company 1 tbsp each 3 times a day. Works wonders.

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Lovebucket Newbie

Just a thought, after my diagnosis, I found that I had all of the symptoms you are having, along with my body simply being swollen all of the time. I went back for more testing and and allergist confirmed that I have allergies along with Celiacs. As soon as I cleared up my diet the symptoms went away.  This is what I did by the advice of my mother in law who is a nurse: I took a benedryl to see if things got a better for me. If it works for you it is more than likely you have some food allergies that need to be addressed.  As I started my gluten-free diet I found myself eating more dairy, corn, soy , oats than I have ever before, all of which effect me negatively, Milk being an actual allergy, the others are just very harsh on the gut.  

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cyclinglady Grand Master
2 hours ago, Lovebucket said:

Just a thought, after my diagnosis, I found that I had all of the symptoms you are having, along with my body simply being swollen all of the time. I went back for more testing and and allergist confirmed that I have allergies along with Celiacs. As soon as I cleared up my diet the symptoms went away.  This is what I did by the advice of my mother in law who is a nurse: I took a benedryl to see if things got a better for me. If it works for you it is more than likely you have some food allergies that need to be addressed.  As I started my gluten-free diet I found myself eating more dairy, corn, soy , oats than I have ever before, all of which effect me negatively, Milk being an actual allergy, the others are just very harsh on the gut.  

Watch the Benedryl.  It crosses the blood brain barrier.  Consider a second generation antihistamine instead. 

Open Original Shared Link

New studies show it may cause dementia which is more concerning to me because I am old! ?

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cyclinglady Grand Master

I would not worry.  Give the gluten free diet a chance to work.  Be sure to get follow-up testing and care.  

Open Original Shared Link

While it is very possible to have more than one autoimmune issue, see if symptoms resolve on the diet.  It might be just celiac-related.   The diet has a very steep learning curve.  Most here take months or a year or so  to heal depending collateral damage.  

 

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Lovebucket Newbie

Taking one Benedryl as a precursor is not a problem what so ever. I am well aware of this study and do not take it except for on occasion. I have a prescription for another medication should I accidentally eat something i'm allergic to.

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Ennis-TX Grand Master

 

On 2/20/2018 at 10:57 AM, cyclinglady said:

Watch the Benedryl.  It crosses the blood brain barrier.  Consider a second generation antihistamine instead. 

Open Original Shared Link

New studies show it may cause dementia which is more concerning to me because I am old! ?

I found this recently in my search for something in case I have a bad reaction to something again, free of most crap including corn syrup, dyes, gluten, soy, etc. Has some stuff I would rather avoid but sure as hell beats the reactions to allergens. Think it would be safe? Open Original Shared Link

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cyclinglady Grand Master
1 hour ago, Ennis_TX said:

 

I found this recently in my search for something in case I have a bad reaction to something again, free of most crap including corn syrup, dyes, gluten, soy, etc. Has some stuff I would rather avoid but sure as hell beats the reactions to allergens. Think it would be safe? Open Original Shared Link

I would suggest consulting with a pharmacist.  Pick a time when they are not so busy (e.g. Sunday afternoon at a hospital) and ask.  They have a huge resource catalog, plus they have years of education!  

 

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cyclinglady Grand Master
4 hours ago, Lovebucket said:

Taking one Benedryl as a precursor is not a problem what so ever. I am well aware of this study and do not take it except for on occasion. I have a prescription for another medication should I accidentally eat something i'm allergic to.

Good to know.  Sometimes, I tend to respond not just to the poster, but to others who might read the thread.  Sorry!  

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plumbago Experienced

Hello,

I have no idea what it could be, but I had joint pain at some point between 6 mos to two years after diagnosis with celiac disease. I got a battery of allergy tests (via blood) and nothing came back positive. Eventually the pain went away.

Maybe get some inflammation markers tested? That would be my only thought.

Since I've done a lot of reading recently about sugar and inflammation (Gary Taubes, Dr Lustig, Dr Terry Wahls), I tend to think of chronic conditions like celiac disease as just one manifestation, and as Dr Wahls says, at bottom it's all the same thing, be it thyroid, celiac disease, SLE, etc...More information than you are bargaining for, I realize.

Good luck.

Plumbago

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plumbago Experienced
12 hours ago, cyclinglady said:

I would suggest consulting with a pharmacist.  Pick a time when they are not so busy (e.g. Sunday afternoon at a hospital) and ask.  They have a huge resource catalog, plus they have years of education!  

 

I love pharmacists!

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    • trents
      Thanks for getting back to us Geordie. From time to time we do get reports of what seems like remission from those who have been diagnosed with celiac disease but it doesn't always last. I don't recall you saying you have been diagnosed with celiac disease, but just having various food intolerances and also implying in your last post that these intolerances are autoimmune related. So, I don't know where you are with celiac disease which is an autoimmune disorder.
    • GeordieGeezer
      Update: Just realised i never updated this post with a major development. since May 2023 i can now eat whatever i want 7 days a week. I accidentally ate the same type of food two days in a row and suffered no reaction so immediately realised my body had recovered. And of all places to discover it i was in a 5 star resort in Greece where there was all you can eat breakfast lunch and dinner buffets so yeah you can maybe imagine i tucked in nicely after so many years of not being able to. Been about 18 months now with zero reactions so even though the modern medical way of thinking is that auto immune disease cant be cured....my stomach says different.
    • sh00148
      Thanks.  So something has come up on his blood tests and I have an appointment to discuss the findings on Monday. My son has been soya free and dairy free for a while as we did York food testing to check for allergies intolerances.     
    • cristiana
      Hi @sh00148 I am so glad that your son is going to have a blood test next week.    If the blood test is that soon, and he has been consuming normal levels of gluten up until now, he should have had enough exposure to gluten to test positive should you decide to stop the gluten immediately, as Scott suggest.  However, one thing you may wish to change in the short term instead/as well is to stop him consuming dairy products.  If he is a coeliac, he may have become temporarily dairy intolerant.  The tips of the villi, which line the gut and are damaged in coeliacs, produce lactase, an enzyme essential for the digestion of dairy.  If they are damaged it can contribute to diarrhea and gas.  I had this some months after my own coeliac diagnosis, and it improved no end when I gave up dairy for a while.  Once on a gluten free diet they heal, and most coeliacs can return to consuming dairy. I would have thought that with those bowel issues in a young child what is happening to him is entirely normal.    
    • Scott Adams
      It’s understandable to feel frustrated, especially when you’re managing celiac well but still experiencing new, unexplained symptoms. Many people with celiac notice sensations around the neck and jaw area, even without visible swelling. Sometimes, lymph node sensitivity or a tight feeling in the throat can linger as part of the body’s inflammatory response, even if your thyroid and other tests come back normal. It sounds like you’ve been thorough with testing and have seen multiple specialists, which is great. A few things might be worth considering: for some people with celiac, there can be lingering sensitivities to trace gluten, cross-reactive foods, or even certain environmental factors that can cause persistent inflammation. Since you’ve tried antihistamines and a humidifier, you might want to discuss options like different allergy medications or seeing an ENT specialist if you haven’t already. Some find that supplements (like anti-inflammatory options or probiotics) help support overall inflammation reduction, though you should always check with your doctor first. It’s frustrating when you feel the symptoms without an obvious cause, but trust your instincts—hopefully, with persistence, you’ll find answers and some relief soon.
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