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

Feel like giving up

kam00096

By kam00096
in Coping with Celiac Disease

Recommended Posts

kam00096 Contributor
kam00096
Posted

I'm at the end of my tether. I've been gluten free for 6 months after 2 lots of positive blood tests. No biopsy as I was messed about by the NHS, had already gone gluten-free and refused to do a gluten challenge at that time. Am waiting on an endoscopy anyways due to ongoing symptoms. 

I feel no better than when I was eating gluten. In fact some of the time I think I actually feel worse. I know some of my symptoms may not be connected but honestly I'm so sick of all of it.

Symptoms are:-  

Nausea (every day, worse when falling asleep and waking up), never feeling like I can go to the bathroom properly (swings between D and C), stomach aches (have actually only started since going gluten free - never had pain before), tremor/ shaking  (especially on waking up), increased heart rate/ palpitations (especially on waking up), night sweats, swollen lymph nodes, acid reflux (despite omeprazole twice a day), dizziness and brain fog, tiredness and insomnia, leg pain, chest pain, cough (doctors say reflux), hair loss, acne.

Ive had the lymph nodes checked and they said they're fine just reactive, and all of my bloods are fine except Vit D and parathyroid which were screwy but had gone back to normal (I suspect they're off again now). I can't link any of the symptoms to particular foods or 'getting glutened'. I'm really careful and some days I feel ok, some are worse than others, but it's never connected to one particular thing/product/ incident. The night time and morning symptoms are consistent/ each day and have been for years. I'm so gutted that I've given up so much and still feel like utter crap. Any advice very gratefully received. 

 

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

Celiac.com Sponsor (A8-M):


cyclinglady Grand Master
cyclinglady
Posted

It could be your parathyroid acting up again.  Easy to find out.  Ask your doctor to test you.  

ironictruth Proficient
ironictruth
Posted

You sound really sick. When my recent endo was done they sampled the small intestine to check for H. Pylori (negative in my case) which can cause issues. 

Is your diet 100% gluten free? Pills, lotions, and processed gluten-free foods for now?  

Do you get a yucky taste in your mouth at all? Could be bile reflux. 

You should talk to a cardiologist about the heart but it could be your anxiety about waking up to all those symptoms or it could be a sympathetic or parasympathetic response upon standing or waking once the adrenaline and hormones kick in. 

Are you losing weight? Have you checked your blood sugar upon waking? 

The two tests you were positive on 6 months ago, have they been run again?

I feel for you. 5 out of 7 days a week I currently open my eyes and dread waking up and getting through the day. We appear fine to others but there is a war going on inside our bodies and it is exhausting physically and mentally to get through the day. 

I hope you have decent docs on your side. 

 

kam00096 Contributor
kam00096
Posted
  • Author

Thanks for the replies! Am sorry other people are still struggling too. Docs have been completely useless - last time I went he said I had 'too many symptoms' for the time slot and would have to pick the ones that were most worrying me! And they say they won't check my vitamin D or parathyroid for a year now they've had one normal result. I've had my blood sugar checked loads of times and it's always fine but they've never done a fasting one. And I'm waiting for an ECG but they said that was more to reassure me than anything else. H pylori was negative too.

Im pretty strict about cross contamination/ gluten-free beauty products etc but yes I theory I could still be getting some from somewhere. Seems unlikely though as my last celiac bloods were back to normal range. 

Not really sure where to go with it next. 

 

cyclinglady Grand Master
cyclinglady
Posted

A year before checking your parathyroid again?  That seems off to me.  Lab levels can and do flucuate.  Google it.  Can you switch doctors?  See an endo?  Get a second opinion?  Pick the symptoms that align with the parathyroid.  Gee, my thyroid can act up even after being constant for a year or more.  If I experience symptoms, my doc runs the tests.  

 If it is celiac disease related, you just have to keep to the gluten-free diet.  No other choices there.  Give it time. Another six months.  

If your glucose readings have been normal, I would not worry about it (i am not a doctor).   In a diabetic, fasting glucose is usually the last test to rise. 

Read more about the parathyroid.  This site is at the top of the Google Hit and it seems very good despite it being a clinic.  

Open Original Shared Link

ironictruth Proficient
ironictruth
Posted

Unfortunately I agree with cycling lady. You may have to get new doctors and new sets of eyes. I think I have had 2 primary cares, 2 cardiologists, 2 gastros, a new celiac specialist gastro, and now working on my second endocrinologist after confirming with a physician informally that the first endocrinologist does not seem like he has the right diagnosis for my thyroid. All of these docs in a year! I trust my new local GI now, am still working on establishing my relationship with a celiac specialist and the new primary care.

BUT, tests are now being run that were not run before.

I really feel for you. I know how awful you are feeling.

 

 

cristiana Veteran
cristiana
Posted

Hiya Kam

Just one thought ... might not help with all your symptoms but might alleviate some - are you still eating oats, abeit pure oats (those that haven't been cross-contaminated by gluten?)

Some celiacs have issues with a reaction to the protein avenin in oats.  I was told by the NHS to give up oats 'for a few months' but when I went back to them I had a very sore, burning stomach indeed, plus terrible C.  Most celiacs tolerate oats well, but I know at least one person on this forum that can't eat them either.

If you are stil eating oats it might be worth giving them a break for a while?  

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

Celiac.com Sponsor (A8-M):


frieze Community Regular
frieze
Posted

yeah, fasting glucose is really for monitoring, not a good test for dx.  if you know some one with a meter, do your own challenge testing....

knitty kitty Grand Master
knitty kitty
Posted

Omeprazole contains sulfur.  Are you allergic to Sulfa drugs? 

deb-rn Contributor
deb-rn
Posted

As I just posted on another thread.... I have had some issues with various systems in my body for years.  Doctors could never figure it out.  Finally I went gluten-free and got some improvement.  Removing 1 irritant often opens the door for the others to rear their ugly heads!  I did an AIP protocol for 3 weeks and have noticed much improvement of the inflammatory responses.  All diseases are a result of a response your body initiates trying to protect itself from the offenders... including asthma, cancer, diabetes, high B/P, RA, heart disease, MS, etc.  This starts with a Leaky Gut.  Google that to find out more.  I have been reading and watching various online seminars for a few years now.  It all clicked a few weeks ago and my husband and I started the AIP lifestyle.  He saw rapid improvement... he didn't even realize he had some issues!  He's now off almost all his medications (I'm a nurse, so I could oversee that), lowered his B/P, got rid of GERD, shrunk his prostate, significantly decreased his arthritis pain and is off the prescription meds.  As I have studied, the things we crave can be because of the antibodies running around in our bloodstream.  They want you to eat the things they attack... they want something to do.  After a few days when the antibodies decline, those cravings lessen and then go away.  My husband ate eggs  EVERY  day for a long, long time.  During the elimination phase, eggs are off limits.  After he re-introduced them... his stomach felt a little off.  He's re-challenged them a few times and found out he's better off only having them a couple times a week and not on successive days.  We learned so much about how to support our systems without stressing them.  I bought 3 of the online seminars because they were so informative.  I can share them if you PM me with your email address.  We have stopped thinking about what we  CAN'T have and focus on what curative properties some foods have.  Our lives are forever changed.  No more gluten free baked goods, noodles, rice, white potatoes for us.  We still eat better than most people and it's certainly more flavorful!  There is hope, but you have to understand that if you keep doing what you are doing, nothing will change.  Some people have adapted to the Western Diet... my husband and I obviously did not.  I have had a weight problem my whole life.  I have lost weight for periods of time, but it always creeps back.  Calories in/ Calories out is a lie.  I have learned that now.  Low Fat diets were debunked last year by the government, but you didn't see it in the headlines.  They have egg on their faces due to following flawed research to make that suggestion.  We are literally killing ourselves with food... often times food that we have been lead to believe is "good for us".... like whole grains!  Learning these things is a real eye opener!  I'm happy to share if I can!

Debbie (recently retired Registered Nurse)

Archived

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

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. SamAlvi
      - SamAlvi replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      High TTG-IgG and Normal TTG-IgA

      Thanks again for the detailed explanation. Just to clarify, I actually did have my initial tests done while I was still consuming gluten. I stopped eating gluten only after those tests were completed, and it has now been about 70 days since I went gluten-free. I understand the limitations around diagnosing NCGS and the importance of antibody testing...
    2. knitty kitty
      - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

      Blood tests for thiamine are unreliable. The nutrients from your food get absorbed into the bloodstream and travel around the body. So, a steak dinner can falsely raise thiamine blood levels in the following days. Besides, thiamine is utilized inside cells where stores of thiamine are impossible to measure. A better test to ask for is the Erythrocyte...
    3. lizzie42
      - lizzie42 replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine?
    4. knitty kitty
      - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

      Yes, I do think they need a Thiamine supplement at least. Especially since they eat red meat only occasionally. Most fruits and vegetables are not good sources of Thiamine. Legumes (beans) do contain thiamine. Fruits and veggies do have some of the other B vitamins, but thiamine B 1 and Cobalamine B12 are mostly found in meats. Meat, especially organ...
    5. lizzie42
      - lizzie42 replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc. Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food....
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,871
    • Most Online (within 30 mins)
      7,748
    Koyanna
    Newest Member
    Koyanna
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • SamAlvi
      High TTG-IgG and Normal TTG-IgA

      By SamAlvi · Posted

      Thanks again for the detailed explanation. Just to clarify, I actually did have my initial tests done while I was still consuming gluten. I stopped eating gluten only after those tests were completed, and it has now been about 70 days since I went gluten-free. I understand the limitations around diagnosing NCGS and the importance of antibody testing and biopsy for celiac disease. Unfortunately, where I live, access to comprehensive testing (including total IgA and endoscopy with biopsy) is limited, which makes things more complicated. Your explanation about small-bowel damage, nutrient absorption, and iron-deficiency anemia still aligns closely with my history, and it’s been very helpful in understanding what may be going on. I don't wanna get Endoscopy and I can't start eating Gluten again because it's hurt really with severe diarrhea.  I appreciate you taking the time to share such detailed and informative guidance. Thank you so much for this detailed and thoughtful response. I really appreciate you pointing out the relationship between anemia and antibody patterns, and how the high DGP IgG still supports celiac disease in my case. A gluten challenge isn’t something I feel safe attempting due to how severe my reactions were, so your suggestion about genetic testing makes a lot of sense. I’ll look into whether HLA testing is available where I live and discuss it with my doctor. I also appreciate you mentioning gastrointestinal beriberi and thiamine deficiency. This isn’t something any of my doctors have discussed with me, and given my symptoms and nutritional history, it’s definitely worth raising with them. I’ll also ask about correcting deficiencies more comprehensively, including B vitamins alongside iron. Thanks again for sharing your knowledge and taking the time to help. I’ll update the forum as I make progress.
    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

      Blood tests for thiamine are unreliable.  The nutrients from your food get absorbed into the bloodstream and travel around the body.  So, a steak dinner can falsely raise thiamine blood levels in the following days.  Besides, thiamine is utilized inside cells where stores of thiamine are impossible to measure. A better test to ask for is the Erythrocyte Transketolace Activity test.  But even that test has been questioned as to accuracy.  It is expensive and takes time to do.   Because of the discrepancies with thiamine tests and urgency with correcting thiamine deficiency, the World Health Organization recommends giving thiamine for several weeks and looking for health improvement.  Thiamine is water soluble, safe and nontoxic even in high doses.   Many doctors are not given sufficient education in nutrition and deficiency symptoms, and may not be familiar with how often they occur in Celiac disease.  B12 and Vitamin D can be stored for as long as a year in the liver, so not having deficiencies in these two vitamins is not a good indicator of the status of the other seven water soluble B vitamins.  It is possible to have deficiency symptoms BEFORE there's changes in the blood levels.   Ask your doctor about Benfotiamine, a form of thiamine that is better absorbed than Thiamine Mononitrate.  Thiamine Mononitrate is used in many vitamins because it is shelf-stable, a form of thiamine that won't break down sitting around on a store shelf.  This form is difficult for the body to turn into a usable form.  Only thirty percent is absorbed in the intestine, and less is actually used.   Thiamine interacts with all of the other B vitamins, so they should all be supplemented together.  Magnesium is needed to make life sustaining enzymes with thiamine, so a magnesium supplement should be added if magnesium levels are low.   Thiamine is water soluble, safe and nontoxic even in high doses.  There's no harm in trying.
    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine? 
    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

      Yes, I do think they need a Thiamine supplement at least. Especially since they eat red meat only occasionally. Most fruits and vegetables are not good sources of Thiamine.  Legumes (beans) do contain thiamine.  Fruits and veggies do have some of the other B vitamins, but thiamine B 1 and  Cobalamine B12 are mostly found in meats.  Meat, especially organ meats like liver, are the best sources of Thiamine, B12, and the six other B vitamins and important minerals like iron.   Thiamine has antibacterial and antiviral properties.  Thiamine is important to our immune systems.  We need more thiamine when we're physically ill or injured, when we're under stress emotionally, and when we exercise, especially outside in hot weather.  We need thiamine and other B vitamins like Niacin B 3 to keep our gastrointestinal tract healthy.  We can't store thiamine for very long.  We can get low in thiamine within three days.  Symptoms can appear suddenly when a high carbohydrate diet is consumed.  (Rice and beans are high in carbohydrates.)  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function, so symptoms can wax and wane depending on what one eats.  The earliest symptoms like fatigue and anxiety are easily contributed to other things or life events and dismissed.   Correcting nutritional deficiencies needs to be done quickly, especially in children, so their growth isn't stunted.  Nutritional deficiencies can affect intelligence.  Vitamin D deficiency can cause short stature and poor bone formation.   Is your son taking anything for the anemia?  Is the anemia caused by B12 or iron deficiency?  
    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc.  Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food. The only processed food they eat regularly is a bowl of Cheerios here and there.  Could shaking legs be a symptom of just a one-time gluten exposure? I guess there's no way to know for sure if they're getting absolutely zero exposure because they do go to school a couple times a week. We do homeschool but my son does a shared school 2x a week and my daughter does a morning Pre-K 3 x a week.  At home our entire house is strictly gluten free and it is extremely rare for us to eat out. If we eat at someone else's house I usually just bring their food. When we have play dates we bring all the snacks, etc. I try to be really careful since they're still growing. They also, of course, catch kids viruses all the time so I  want to make sure I know whether they're just sick or they've had gluten. It can be pretty confusing when they're pretty young to even be explaining their symptoms! 
×
×
  • 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.