Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Chronic Fatigue And Coeliacs

Billygean

By Billygean
in Doctors

Recommended Posts

Billygean Apprentice
Billygean
Posted

Hi all

I'm new to this so not sure if I'm writing in the correct place. Basically just looking for some advice on whether I should get tested for Celiacs. Bear with me, my symptoms are varied and strange!

Last summer I got food poisoning and most days since that I felt sick and on a few occasions vomited. I was previously fit and healthy so it was baffling, and, after putting me on Omeprazole for a month or so my doctor basically said it was an IBS sort of reaction and to ignore it. Previous to this I had surgery (foot) a couple of years before and from that date - who knows why - had lots of IBS type symptoms. Cramping, regular diarhoea etc. It should probably be noted that when I had the surgery I was at uni and eating a lot of pasta/pizza/bread, and over the summer when I was sick a lot I was eating sandwcihes every day and pasta almost every night.

In november and december 2007 I had what I thought were two gastric flues and these took several weeks each to recover from.

I was not well for a few months with the sickness but was functioning. I got diagnosed with mononucleosis/glandular fever in early January. I strugged on throughout January and February and I think pushed my body way too hard and ended up in bed late february and basically have not surfaced since.

My doctor took bloods to check my white blood cells and thyroid. These are normal so he diagnosed post viral fatigue.

I am however not getting much better at all. I know CFS is a very slow progressing recovery but I am generally still sick often, diarhoea often, have some mouth ulcers - say one a month - and VERY hungry in the mornings and get hunger like pangs and cravings throughout the day. If relevant, I also have some spleen pain, stomach pains, and lots of UTIs for no reason my doctor could find.

Spoke to my cousin who was diagnosed with CFS and it turned out to be coeliacs and he thinks I should get tested. I have a family history of autoimmune conditions: cousin with coeliacs, aunt and nan with thyroid function problems, aunt with addissons, father with vitiligo.

Any advice would be greatly appreciated. I am sort of hopeful it is celiacs because it is at least slightly more controlable than CFS.

Billygean...

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


kbtoyssni Contributor
kbtoyssni
Posted

I would absolutely get tested! It certainly can't hurt. With your GI symptoms plus fatigue and a family history, I'd say odds are high that you have it. Do remember that testing often results in false negatives so you may want to try the diet even if testing is negative.

My main symptoms were chronic fatigue and joint/muscle pain.

ShayFL Enthusiast
ShayFL
Posted

Yes yes yes!! And get an ANA too and have him test your thyroid antibodies. Look at your lab results and make sure your TSH is below 2. Most do best when it is below 1. I have to have mine suppressed to be symptom free from Thyroid issues. Be pro-active. ALWAYS get copies of your labs. It is your legal right.

Billygean Apprentice
Billygean
Posted
  • Author

Thanks, guys. Went to see my GP today and she was 'amazed' my specialist didn't test for it. I woke up in the night ravenous as well and have lost weight so am really hopeful it's this. otherwise I'm not sure what will explain my symptoms and going back to plain old chronic fatigue will be a bit of a come down...

Billygean

mushroom Proficient
mushroom
Posted

Billygean: You sound like a carbon copy of my niece; her sequence, with some other things thrown in along the way, was mononucleosis, CFS, celiac. Thank goodness you have a doc who recognizes this. Good luck.

MDRB Explorer
MDRB
Posted

Hi,

I also had glandular fever and was diagnosed with chronic fatigue. Because of the chronic fatigue diagnosis I just came to accept that I would never have the kind of energy that most people have... Until I was finally diagnosed with celiac disease. Your symptoms sound similar to mine before I was diagnoses, I think it would be wise to get tested.

Good luck

Billygean Apprentice
Billygean
Posted
  • Author

Can celiacs be triggered by a virus then? I am quite hopeful. The test is tomorrow.

been eating loads of gluten in preparation. now mouth is full of ulcers, glands have gone up, throat kills. It's like having mono again! Not sure where I caught this bug from (if it is a bug) because I'm housebound and don't see anyone!!

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


Ursa Major Collaborator
Ursa Major
Posted

How you feel now that you have upped your gluten is VERY telling! Before going gluten-free I almost always had swollen glands, a sore throat, hoarse voice and I would get mouth ulcers, too (besides the diarrhea, skin problems and too many other issues to mention here).

It sounds like you are definitely reacting to the gluten. As somebody already said, make sure you try the gluten-free diet even if your tests come back negative for celiac disease. There is a high rate of false negatives, but there are no false positives. If you test positive, you have celiac disease, but if you test negative it won't rule it out (despite what a lot of doctors think).

MDRB Explorer
MDRB
Posted
Can celiacs be triggered by a virus then? I am quite hopeful. The test is tomorrow.

been eating loads of gluten in preparation. now mouth is full of ulcers, glands have gone up, throat kills. It's like having mono again! Not sure where I caught this bug from (if it is a bug) because I'm housebound and don't see anyone!!

Yep,

Apparently the onset of celiac disease can be triggered by a virus, pregnancy or a period of high stress. Just to be clear, the virus or whatever doesn't cause the celiac disease, its always been there, kind of like a dormant volcano just waiting for the right moment to turn your life upside down :rolleyes:

RiceGuy Collaborator
RiceGuy
Posted

Given the connection between Celiac and the adenovirus, I wonder if the trigger might always involve the virus in some way. The adenovirus is what causes a number of illnesses, including pink eye, mono, croup, various intestinal disorders, and more.

Billygean Apprentice
Billygean
Posted
  • Author

I don't know anything about viruses, but I thought epstein barr causes mono?

Rachel--24 Collaborator
Rachel--24
Posted
I don't know anything about viruses, but I thought epstein barr causes mono?

Yeah...Epstein Barr causes mono over 90% of the time. Some other organisms can cause mono occassionaly....but usually its EBV.

angelbender Newbie
angelbender
Posted

Yup, Epstein Barr is thought to cause mono most of the time, however, previously for years they'd thought that Epstein Barr caused CFS (or CFIDS) but I have heard that they have changed that thinking now. Just an FYI and not to be scary, I was dx with CFS over 20 yrs ago and Fibromyalgia (formally) 8 yrs ago and even tho I'm of course completely compiant on the gluten free diet (and take no chances), my fatigue/exhaustion levels

have not improved. I dearly hope that things are different for you. When I had the bad diarrhea I thought

that it was the IBS of Fibro.....we Fibromites tend to think that everything is Fibro......and now I have to be

careful not to think that everything is Celiac and carefully evaluate the situation....that make sense? When I

was getting my dx for Celiac alot of people told me that my CFS and Fibro would get better but they haven't.

I don't mean to be bummy......just to let you know so that you can be aware of everything....make sense? Hope this wasn't too bummy......I have come to terms with my CFS/Fibro and work around it the best I can with the best sense of humour that I can. :rolleyes:

Billygean Apprentice
Billygean
Posted
  • Author
Yup, Epstein Barr is thought to cause mono most of the time, however, previously for years they'd thought that Epstein Barr caused CFS (or CFIDS) but I have heard that they have changed that thinking now. Just an FYI and not to be scary, I was dx with CFS over 20 yrs ago and Fibromyalgia (formally) 8 yrs ago and even tho I'm of course completely compiant on the gluten free diet (and take no chances), my fatigue/exhaustion levels

have not improved. I dearly hope that things are different for you. When I had the bad diarrhea I thought

that it was the IBS of Fibro.....we Fibromites tend to think that everything is Fibro......and now I have to be

careful not to think that everything is Celiac and carefully evaluate the situation....that make sense? When I

was getting my dx for Celiac alot of people told me that my CFS and Fibro would get better but they haven't.

I don't mean to be bummy......just to let you know so that you can be aware of everything....make sense? Hope this wasn't too bummy......I have come to terms with my CFS/Fibro and work around it the best I can with the best sense of humour that I can. :rolleyes:

What are your energy levels like? I currently cannot sit up for more than 10 minutes - I trust you are not this bad?

PureHeart Newbie
PureHeart
Posted

Some of your stories sound similar to mine - I was diagnosed with Glandular Fever (mono), Alopecia, Tonsillitis (frequently) then Chronic Fatigue Syndrome/ME. I got sick of being sick and did exclusion diets and discovered that wheat, dairy, chocolate, chicken and eggs make me ill. Getting rid of gluten wasn't enough on it's own as I guess the damage had already been done to my stomach and I now cannot tolerate cow's milk at all (it causes symptoms like fibromyalgia so if you are gluten-free and not DF it might be worth giving it a try). My asthma has improved dramatically, as have my skin problems. Goat's milk is much easier to digest btw.

Good luck and I hope you get much better soon. Are you taking B vitamins (yeast free) and probiotics? Along with Glutamine and Candiclear from Higher Nature I find they help to heal the gut after an accidental glutening.

PureHeart x

marciab Enthusiast
marciab
Posted

I was diagnosed with CFS/ME/FM back in 1990 and mine started with a virus too. I responded immediately to the Gluten-free Casein-free + diet back in 2005, but it's taken me awhile to feel good again. I wasn't diagnosed with celiac until 2007, 17 months after going on the gluten-free diet, so I'm not sure if I was a celiac at first or if it happened in 2004 - 5 when my digestive tract stopped working.

I'm still working on my fatigue / stamina issues. Mine were a combo of chronic hypoglycemia and orthostatic intolerance. I eliminated the hypoglycemia by going on the Paleo diet. And am working on the orthostatic intolerance now ... Check out my signature (long, but the whole story) and this thread on treating OI/NMH. You may find that you just need to add salt water several times a day to your diet.

I just vacuumed my LR/DR/K and bathed two dogs without having to take a break. This wasn't possible last month. : )

Open Original Shared Link

BTW, you may or may not have to eliminate more that gluten to feel good. I've read some studies that say we have a build up of cytokines / excitoxins in our bodies. Chemicals are hard on CFSers.

good luck with this ... Marcia

Billygean Apprentice
Billygean
Posted
  • Author

thanks for all this information, it's invaluble that I can tap into your 10 years of trying things!

My problem is that i don't feel chronically fatigued. I used to, back in jan/feb right after I had mono, I felt like I was dragging my body around and was too tired to think. But now I just feel dizzy. However my doctor said my blood pressure's normal when I stand etc and it's just a different kind of fatigue. It gets worse the longer I stand for but what makes me think he's right is that it's present if I'm sitting, or even if I'm lying down but lifting my head up... baffling!

Had blood test last fri, doctor expects results tomorrow - nervous!

RiceGuy Collaborator
RiceGuy
Posted

OK, you guys are correct about EBV causing more cases of mono than the adenovirus (just looked it up). But I guess I can also add that I never said adenovirus was always the cause :) I had looked up adenovirus on the CDC's website, and mono was listed, so that's where that came from.

As for fibro symptoms, I had all that sort of stuff, to the point I couldn't walk not a single step. After doing some research (including on this board), I started taking a sublingual methylcobalamin (B12) and magnesium. And after well over a year of pain and not being able to walk, I was actually on my feet in two weeks! Sure, there was certainly some lingering discomfort, but it did go away completely over time. Now, this is not to suggest that every case of fibromyalgia is the result of deficiencies, but I constantly wonder how many people are suffering needlessly, for something so simple to fix.

Billygean Apprentice
Billygean
Posted
  • Author

Well my doctor's receptionist told me today that the doctor was out and wasn't therefore available to tell me my blood test results. However the receptionist (not to be trusted, surely!) told me they were all within normal limits but none of the numbers or anything and said the doctor would speak to me on Monday.

God it's so difficult to get answers; my doctor doesn't seem remotely bothered that someone who was previously a lawyer is now lying day after day on the sofa :o(!

marciab Enthusiast
marciab
Posted

Sorry to hear your docs not concerned about you laying around. I got this too ... Fatigue doesn't seem to get a lot of attention.

I understand that some of the tests they are using now to diagnose celiac won't pick up gluten sensitivity. So you may want to go ahead and give up gluten to see if you feel better.

Even at my sickest I didn't feel fatigued all day every day. I felt sickly every day, but not necessarily fatigued. My fatigue appears to be mostly from PEM (post exertional malaise). Meaning if I run errands or do housework one day, I'm layed up the next 2 - 3 days ... But I feel great again after a few days of rest.

The way my doc found my OI/NMH was after I'd been laying down for an hour at his office, my BP went up to 125/90 and after standing in one spot for 2 minutes, it went down 20 pts. This is considered the poor man's tilt table test. When I first had it taken at the office it was down to 78/58. So I knew something was up ...

So you may need to check your BP after you've been laying down for an hour to get it as high as it should be. If I hadn't been laying down, my BP would not have taken such a dive. And my OI/NMH wouldn't have been caught.

You may want to get a BP cuff so you can track it yourself too.

Hopefully, since you're still eating gluten all of this will go away once you've gotten it out of your system. FWIW, I'd use DPP-IV to help remove the gluten from your body quicker.

Good luck with this ... Marcia

  • 2 weeks later...
SMA60 Newbie
SMA60
Posted
Yeah...Epstein Barr causes mono over 90% of the time. Some other organisms can cause mono occassionaly....but usually its EBV.


Hello, I read you were Dx'd with Graves. I have Hashimoto's Thyroiditis, an autoimmue disorder between Graves and hypothyroidism.
My lab came back neg. for Celiac's. Was wondering if I should be checked again. My husband is a celiac and has hypertension and a B-12 deficiency.... What am I doing wrong? :(

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,549
    • Most Online (within 30 mins)
      7,748
    Blough
    Newest Member
    Blough
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Scott Adams
      Taken Seriously

      By Scott Adams · Posted

      Your post demonstrates the profound frustration and isolation that so many in the Celiac community feel, and I want to thank you for channeling that experience into advocacy. The medical gaslighting you endured for decades is an unacceptable and, sadly, a common story, and the fact that you now have to "school" your own GI specialist speaks volumes about the critical lack of consistent and updated education. Your idea to make Celiac Disease a reportable condition to public health authorities is a compelling and strategic one. This single action would force the system to formally acknowledge the prevalence and seriousness of the disease, creating a concrete dataset that could drive better research funding, shape medical school curricula, and validate the patient experience in a way that individual stories alone often cannot. It is an uphill battle, but contacting representatives, as you have done with Adam Gray, is exactly how change begins. By framing it as a public health necessity—a matter of patient safety and protection from misdiagnosis and neglect—you are building a powerful case. Your voice and your perseverance, forged through thirty years of struggle, are exactly what this community needs to ensure that no one else has to fight so hard just to be believed and properly cared for.
    • Scott Adams
      Looking for a gluten-free roomie in Denver CO

      By Scott Adams · Posted

      I had no idea there is a "Louisville" in Colorado!😉 I thought it was a typo because I always think of the Kentucky city--but good luck!
    • Scott Adams
      Allergy medication: cetirizine by the HealthA2Z is it gluten free?

      By Scott Adams · Posted

      Navigating medication safety with Celiac disease can be incredibly stressful, especially when dealing with asthma and severe allergies on top of it. While I don't have personal experience with the HealthA2Z brand of cetirizine, your caution is absolutely warranted. The inactive ingredients in pills, known as excipients, are often where gluten can be hidden, and since the FDA does not require gluten-free labeling for prescription or over-the-counter drugs, the manufacturer's word is essential. The fact that you cannot get a clear answer from Allegiant Health is a significant red flag; a company that is confident its product is gluten-free will typically have a customer service protocol to answer that exact question. In situations like this, the safest course of action is to consider this product "guilty until proven innocent" and avoid it. A better alternative would be to ask your pharmacist or doctor to help you identify a major national brand of cetirizine (like Zyrtec) whose manufacturer has a verified, publicly stated gluten-free policy for that specific medication. It's not worth the risk to your health when reliable, verifiable options are almost certainly available to you. You can search this site for USA prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
    • Scott Adams
      Protein or fat?

      By Scott Adams · Posted

      What you're describing is indeed familiar to many in the Celiac community, especially in the early stages of healing. When the intestinal villi are damaged from Celiac disease, they struggle to properly digest and absorb fats, a condition known as bile acid malabsorption. This can cause exactly the kind of cramping and spasms you're seeing, as undigested fats can irritate the sensitive gut lining. It is highly plausible that her reactions to dairy and eggs are linked to their higher fat content rather than the proteins, especially since she tolerates lean chicken breast. The great news is that for many, this does improve with time. As her gut continues to heal on a strict gluten-free diet, her ability to produce the necessary enzymes and bile to break down fats should gradually return, allowing her to slowly tolerate a wider variety of foods. It's a slow process of healing, but your careful approach of focusing on low-fat, nutrient-dense foods like seeds and avocado is providing her system the best possible environment to recover. Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful: Thank you for sharing your story—it's a valuable insight for other parents navigating similar challenges.
    • Beverage
      Diagnosed celiac for 1-2 months ago and everything makes me bloated.

      By Beverage · Posted

      I had a very rough month after diagnosis. No exaggeration, lost so much inflammatory weight, I looked like a bag of bones, underneath i had been literally starving to death. I did start feeling noticeably better after a month of very strict control of my kitchen and home. What are you eating for breakfast and lunch? I ignored my doc and ate oats, yes they were gluten free, but some brands are at the higher end of gluten free. Lots of celics can eat Bob's Red Mill gluten-free oats, but not me. I can now eat them, but they have to be grown and processed according to the "purity protocol" methods. I mail order them, Montana Gluten-Free brand. A food and symptoms and activities log can be helpful in tracking down issues. You might be totally aware, but I have to mention about the risk of airborne gluten. As the doc that diagnosed me warned . . Remember eyes, ears, nose, and mouth all lead to your stomach and intestines.  Are you getting any cross contamination? Airborne gluten? Any pets eating gluten (they eat it, lick themselves, you pet them...)? Any house remodeling? We live in an older home, always fixing something. I've gotten glutened from the dust from cutting into plaster walls, possibly also plywood (glues). The suggestions by many here on vitamin supplements also really helped me. I had some lingering allergies and asthma, which are now 99% gone. I was taking Albuterol inhaler every hour just to breathe, but thiamine in form of benfotiamine kicked that down to 1-2 times a day within a few days of starting it. Also, since cutting out inflammatory seed oils (canola, sunflower, grapeseed, etc) and cooking with real olive oil, avocado oil, ghee, and coconut oil, I have noticed even greater improvement overall and haven't used the inhaler in months! It takes time to weed out everything in your life that contains gluten, and it takes awhile to heal and rebuild your health. At first it's mentally exhausting, overwhelming, even obsessive, but it gets better and second nature.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.