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

Could celiac really be making me feel this bad?

kam00096

Recommended Posts

kam00096 Contributor
kam00096
Posted

Hi. I've posted before about this but I keep getting worse and more stressed. I'm so confused and don't know what to do next. I've had two blood tests come back positive for celiac but will have an 18 week wait for an appointment with a gastroenterologist and another wait after that for an endoscopy. I had decided not to give up gluten until after that because I'm phobic about vomiting and everyone's telling me I'll be so much more ill if I cut it out just now then have to do a gluten challenge. 

Trouble is I'm really ill at the moment and I'm not sure how much longer I can cope with it. I'm also not convinced that celiac can be the cause of all of my neurological symptoms and am still pretty terrified that I have ms or some other illness. I've seen a neurologist and ENT in the past but they just dismissed me and I can't get tested for anything else because the doctor thinks it's all in my head, so no mri. 

My symptoms are... nausea and problems with swallowing plus severe IBS  (for over 10 years), bloating etc, reflux, dizziness/ boatiness (for last 3 years), fatigue, weakness, legs feel like jelly, off balance, muscle pain and twitches, pins and needles, night sweats, night terrors, waking up with full body tremors, blurred vision, extremely poor night vision, essential tremor, hair loss... 

My B12, ferritin, blood sugar and thyroid tests all came back fine. The docs have just run a micronutrient panel but are saying it will take weeks or months for the results to come back and they don't expect anything to be wrong with them anyways. 

I don't know what to do but I've wasted the last 13 years of my life being ill and I'm at the end of my tether. 

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

Celiac.com Sponsor (A8-M):


Irene Joanne Explorer
Irene Joanne
Posted

Any chance you can be put on a cancelation list at the doctors? Sometimes it does help to call and explain your situation and maybe they can fit you in sooner. Other than that I don't know what to advise because I was n a similar situation and I'm  not sure if I would have waited that long. I'm just grateful that I got in to see the specialist within a couple months and his sweet booking nurse fit me in for a biopsy two weeks later. Can you cut back on gluten for now? I just learned that you only need to eat gluten for two weeks prior to a biopsy- so not as bad as the 3 months for the blood tests.

just before diagnose I had decided if I had to wait months for the biopsy- I wouldn't risk my health by continuing to eat gluten. But I'm new to celiac and there are much more experienced people on here that hopefully will offer you better support.

 

cristiana Veteran
cristiana
Posted

Hi Kam - I have just read your older post, too, and see you are in the UK?  Am I right?

I'm in the UK and I am only too well aware that the wheels role slowly in the NHS for these follow up appointments with a gastroenteroligst and then on top of that, the actual biopsy.    I see from your previous posts that going private is not an option - I think my friend went private and it cost about £800 for the biopsy and the consultations but that was a couple of years ago.  However, if you could get the money together I imagine you could get all this testing behind you within the month?  

You may want to give the Coeliac UK helpline a ring and see if they can give any particular advice regarding the long wait you have ahead of you and your awful symptoms to see if there are any other options available to you within the NHS system.

Open Original Shared Link

Everyone's symptoms are different but if you were to search the site with all your symptoms I think you will see that there are examples of people who have had similar experiences - indeed some people have been very poorly - and gluten was found to be the culprit after all.     From your list I have experienced the following symptoms

IBS, bloating etc,  fatigue, weakness, off balance, muscle pain, twitches, night sweats, extremely poor night vision, hair loss... 

plus internal itching, hip pain, temporary visual disturbances on waking (hypnopompic hallucinations), migraines of all varieties ... and I am sure I could list more.  Oh yes - and terrible anxiety before going gluten free from which I have occasional setbacks, but I'm winning. 

Some have been to do with gluten I am quite sure.  Others I am not so sure about - the latest one has been the sensation of my skin being pricked when I go from hot to cold rooms.  Although I am strict about being gluten free I have just realised that some of the yummy Easter eggs I have been scoffing 'may have traces of wheat'....   I stopped the chocolates and the prickling has gone!

It does sound as if you are on the right road to finding out what is wrong.  

Keep us posted.

 

 

 

cristiana Veteran
cristiana
Posted

A couple of other things I forgot to say. 

The physical manifestations of coeliac disease are very real but if my own experience is anything to go by anxiety just makes everything a whole lot worse - too much adrenaline does a lot of strange things to us.  If you are feeling very anxious try to see what steps you can take to alleviate anxiety.  There are many helpful posts on the subject on this website.

I harp on about it quite a lot in my posts on anxiety and depression but I found the principles outlined in the following books so helpful whilst I was waiting for my DX.  You might like to take a quick look, even without buying them there are some helpful tips on line.

Open Original Shared Link

The 'six steps' are to do with:

- physical exercise 
- omega-3 fatty acids
- natural sunlight exposure 
- restorative sleep
- social connectedness
- meaningful, engaging activity
 

Although the book is to do with depression I found it helped with my anxiety, too.   Or, more specifically to do with anxiety:

Open Original Shared Link

Also, I notice you say you are worried you have MS or some other illness.   A whole lot of us on this website have found ourselves in this situation and it really did turn out to be coeliac disease all along.   My nutritionalist calls it 'the great mimicker'.   

All the very best.

 

 

Palvyre Apprentice
Palvyre
Posted

That can all be Celiac related. I would also ask for a Lyme disease test. 

kam00096 Contributor
kam00096
Posted
  • Author

Thanks very much for all of the replies. They're really helpful! I am in the uk and unfortunately there's no way to get the scope and biopsy done quicker - I just can't justify taking on the debt to have it done privately, particularly not as my job isn't too secure at the moment because of my attendance (it's a nasty vicious cycle). And my doctor told me there's no way to speed up the process "unless it's cancer, so there's no point in making a fuss about it" which I understand but don't find particularly helpful. I think I am just going to go gluten free at the moment and see how I get on. 

Something else I've noticed recently (and a few times over the past few years) is that I seem to get a lot of symptoms of hypo/ hyperglycemia too. My blood sugar has always been fine but I've had an awful sweet taste in my mouth again recently, which I haven't read anywhere is a celiac thing...

 

Irene Joanne Explorer
Irene Joanne
Posted
1 hour ago, kam00096 said:

Thanks very much for all of the replies. They're really helpful! I am in the uk and unfortunately there's no way to get the scope and biopsy done quicker - I just can't justify taking on the debt to have it done privately, particularly not as my job isn't too secure at the moment because of my attendance (it's a nasty vicious cycle). And my doctor told me there's no way to speed up the process "unless it's cancer, so there's no point in making a fuss about it" which I understand but don't find particularly helpful. I think I am just going to go gluten free at the moment and see how I get on. 

Something else I've noticed recently (and a few times over the past few years) is that I seem to get a lot of symptoms of hypo/ hyperglycemia too. My blood sugar has always been fine but I've had an awful sweet taste in my mouth again recently, which I haven't read anywhere is a celiac thing...

 

Good for you for doing your research and making the best decision you can in your circumstances. Keeping your job is important too- hopefully going gluten free now will make a big difference in how you feel. Get well!

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

Celiac.com Sponsor (A8-M):


Posterboy Mentor
Posterboy
Posted

Kam00096,

I think everybody on this board feels your pain.  18 weeks seems like a long time but we all have to do what is best for ourselves.

Try searching on this site for blood serology results they can be very helpful.

https://www.celiac.com/articles/13/1/What-is-the-probability-of-false-positive-and-false-negative-results-from-the-serological-tests/Page1.html

I have included one I found in a quick 5 minutes search.  Obviously it deserves more time than that.

But positive serology was enough for me.  Serology is often 90+ percent indicative and you have had two positive's already.

I was feeling at my worst and had no doubt gluten was the cause and have gotten better everyday since.

No one can decide but you what is best for you we can only offer advice and share our stories.

A compromise that might work in this case is a low carb diet.  It should help bloating from poorly digested carbs in the diet.  Also low carb does not mean gluten free. 

You should still have enough gluten in a low carb diet to trigger poor compliance.

Most gluten antibodies go down in that time so I wouldn't go completely gluten free for sure but less gluten is always a good thing if you think (know positive blood test) is a problem for you and you have decided to hold out for the biopsy.

You might try spelt.  This article covers why spelt my be a good low gluten alternative.

Open Original Shared Link

I hope this is helpful and good luck on your journey.

For the fatigue and energy issues ***** this is not medical advice but I have said this elsewhere on this board 100% Magnesium CITRATE is amazing for chronic fatigue since I began taking it 200mg 3/daily with each meal I have not had fatigue issues since.  At one time I even took 3/day plus 1 hour before bedtime for restful dreams but do not need it that often anymore.

It will be harder to find the CITRATE form but your body will thank you for it with much higher energy levels.

And yes gluten can cause all these symptom's you mention and why they call it the "iceberg" disease/diagnosis because up to 20 other disease are associated some strongly some only occurring with a diagnosis.

Posterboy,

 

 

joan b Newbie
joan b
Posted

i am having another attack of anxiety due to accidently eating gluten but saying that im begining to think im lactose intolerant  i am shaking cant relax cant sleep x i am on citalopram thought this would help with the anxiety

 

 

cristiana Veteran
cristiana
Posted

Hi again.  Kam - it seems that six weeks is the recommended length of a gluten trial in the UK if you need to reintroduce it and I am fairly sure my own doctor said at least two slices of normal toast every day would be adequate - but you might want to check that.

 Open Original Shared Link

I took it upon myself to eat everything I could that I knew would be forbidden once I was gluten free so ate Weetabix, Twix Bars, Penguins.... It brought back a tight headache across the temples that I hadn't had since I was at school. I can almost feel that headache again just thinking about that gluten trial!

I sometimes have the sweet taste but it has been down to new toothpaste or artificial sweeteners in drink.   I get very shaky sometimes if I am not eating regular meals..  If you are concerned the blood test for diabetes is very easy.  Have you had a test before?

Joan b - I was put onto citalopram when I was undiagnosed.  It was a very small dose so I am still not sure whether it helped or not although I think it probably took the edge off things.  I felt worse for a few days when I first took it which apparently is a common side-effect.  It is worth remembering this - things should get better soon.  In my own case I found it was definitely worth looking at other life-style factors such as getting enough exercise, sunshine, omega 3 etc in the meantime.

 

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.