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

Hi, I'd Really Appreciate Some Advice...

English Chick

Recommended Posts

English Chick Newbie
English Chick
Posted

Hi everyone,

Since the age of twelve I've suffered from IBS although I wasn't diagnosed until a few years ago, at first it was quite severe I was constantly on the loo sweating/feeling faint/sick with diarrhea, I went to the doctors numerous times but they couldn't diagnose me so I guess I learned to live with it. Over the years It has improved, it only get's really bad maybe once/twice a week but then again it really does depend I go through good and bad phases...A few years ago I started with another symptom, bloatedness. My tummy would get so big I would look 6 months pregnant! This was when a doctor finally diagnosed me with IBS and gave me Colpermin which eased the bloatedness a little (passing wind helped, sorry to be so graphic!) I never found something to ease the first symptom. I've tried watching my diet for something that triggers either symptom but haven't found anything in particular really...

About 18 months ago I started getting migraines every day and this lasted weeks, was constantly tired from this, had no energy etc, I went to the doctor and he told me that it was probably just a phase and the migraines would probably go in their own time. I wasn't happy but I thought oh well I'l wait and see. It got worse so I thought I would go and get my eyes tested, they referred me to a specialist and they found nothing. They suggested diabetes, went back to the doctors, did blood tests and everything came back fine. I went to see another doctor and he told me that it was the contraceptive pill I was on the hormones didn't agree with me. He said I was at very high risk of having a stroke, put me on these tablets to stop the veins in my head from swelling which spaced me out completely! I ended up coming off them and all the other medication as I just didn't feel right having all this med in my system. The migraines stopped for a short while but now they're back. First started with headaches then the migraines came, IBS still as bad if not worse, constantly lethargic, I have mood swings (always had them really I always put it down to the pill) and recently I've started to get really dry skin on my hands with blotchy patches. All in all over the past few months I've felt considerably worse in myself.

I went to the doctors yesterday and told him I had been looking on the internet about food allergies/celiac after someone asked me if I had been tested and he simply replied with 'because your asthmatic you would probably be intollerant to most things so it's not worth you getting tested' and advised me to cut out wheat then lactose until I feel better. I've been looking at this site for the past week or so and my symptoms seem to be very similar to a lot of people on here. I would really appreciate it if I could get some advice as I don't seem to be getting anywhere with my doctors and everyone on here seems so nice, this has been the best Celiac site I have come accross :D I've stayed off Gluten food for three days now and feel a lot better but I don't know if that's just coincidence...

Thankyou in advance, I apologise for the extremely long post!

X

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

Celiac.com Sponsor (A8-M):


~alex~ Explorer
~alex~
Posted
I went to the doctors yesterday and told him I had been looking on the internet about food allergies/celiac after someone asked me if I had been tested and he simply replied with 'because your asthmatic you would probably be intollerant to most things so it's not worth you getting tested' and advised me to cut out wheat then lactose until I feel better.

I am asthmatic and definitely not intolerant to most things. I have Celiac and have found only a handful of other food that I may be intolerant to.I really don't think asthma would result in a false positive on the Celiac panel. At least your doc suggested cutting out wheat but you would really need to cut out all gluten sources.

I think you should be tested if that is what you want to do. I hope your doctor will test you or that you can find a different one that will. If not, you could always try going gluten-free and see how you feel. I hope you find some answers soon. It sounds like you have been feeling quite ill for awhile.

edit: I initially read your post wrong so I edited my response accordingly.

Lisa Mentor
Lisa
Posted

Welcome and we're glad that you found this site so informative. :)

I am not a fan of the doctors you have been seeing. There are three ways (to date) for Celiac testing. 1. You can have an IgA Antibody Blood Panel. 2) An endoscopy/biopsy exams can confirm Celiac, but it is often hit or miss. 3) Positive dietary response could confirm Celiac or Gluten Sensitivity without an "official" diagnosis.

Should you decide to pursue further testing it is important to remain on a full gluten diet.

If you choose to forgo testing you can begin your gluten free diet immediately. Here you can learn how to begin. The diet is much more involved than just removing wheat from your diet. This site will be helpful.

I hope you find your answers soon and feel free to ask away.

nikki-uk Enthusiast
nikki-uk
Posted

Hi English Chick!!!

My husband and son are both coeliacs.

First off - assuming you are in England - your experience is fairly typical...my hubby was ill for many years before being diagnosed ..and my son only diagnosed 'cos of his Dad :rolleyes:

Your GP is WRONG to say 'because you are asthmatic you would be allergic to most things'.....DEAR GOD!!!!

First off Coeliac Disease is an intolerance NOT an allergy - and if your GP knew didly squat he'd also know it's an autoimmune reaction.

Secondly - DON'T GO gluten-free YET!!!!!

Insist on the blood tests (get them done NOW whilst you potentially have gluten anti-bodies in your system) - once you go gluten-free for any length of time it may give you a false negative <_<

Is there another GP you can see??? (I found the younger of the 2 at my surgery has more knowledge about celiac disease )

If he's not sure what tests to do contact Open Original Shared Link who can advise :)

English Chick Newbie
English Chick
Posted
  • Author
Hi English Chick!!!

My husband and son are both coeliacs.

First off - assuming you are in England - your experience is fairly typical...my hubby was ill for many years before being diagnosed ..and my son only diagnosed 'cos of his Dad :rolleyes:

Your GP is WRONG to say 'because you are asthmatic you would be allergic to most things'.....DEAR GOD!!!!

First off Coeliac Disease is an intolerance NOT an allergy - and if your GP knew didly squat he'd also know it's an autoimmune reaction.

Secondly - DON'T GO gluten-free YET!!!!!

Insist on the blood tests (get them done NOW whilst you potentially have gluten anti-bodies in your system) - once you go gluten-free for any length of time it may give you a false negative <_<

Is there another GP you can see??? (I found the younger of the 2 at my surgery has more knowledge about celiac disease )

If he's not sure what tests to do contact Open Original Shared Link who can advise :)

Thanks Nikki, I'm going to go docs again and see another doctor. I went into Holland & Barretts today and asked about allergy/intolerance testing and they said there's a woman who works there that can test me against 81 different foods! And it costs me

nikki-uk Enthusiast
nikki-uk
Posted
Thanks Nikki, I'm going to go docs again and see another doctor. I went into Holland & Barretts today and asked about allergy/intolerance testing and they said there's a woman who works there that can test me against 81 different foods! And it costs me
English Chick Newbie
English Chick
Posted
  • Author
Why indeed - although the above mentioned test CANNOT test for coeliac disease ...and has had quite a bit of bad press <_<

Good Luck :)

The Holland & Barrett test? I mentioned that I thought I might have Celiac and she didn't say anything...what have you heard?

Also apparently Boots have a test you can buy normally

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

Celiac.com Sponsor (A8-M):


nikki-uk Enthusiast
nikki-uk
Posted

Here's one article re: Holland and Barrett Open Original Shared Link

They do not do the specific tests for celiac disease which are:

Anti-tissue Transglutiminase IgA (tTg)

Anti-Endomysial IgA (EMA)

Total serum IgA

These all together give a clearer picture of what is going on.

There is one test you can buy that is advertised on CUK's website - but it's only one component of the test (tTg)

Open Original Shared Link

:)

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
      132,872
    • 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):

  • Who's Online (See full list)

    • There are no registered users currently online

  • 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.