Bloods positive, no symptoms

[OhDeer]

So I was accidently tested by my doctors for coeliac when I went in for bloods for something completely unrelated and found out that I will need to go for a biopsy however we sat and went through possible symptoms of coeliac disease and I have none and it's sending me insane.. 

Now I have to wait for a biopsy, does anyone know how long this will take and when I do go gluten free will I start getting symptoms?  

It's sending me mad having no one to ask questions too. No one in my close family has been diagnosed with it and I don't personally know anyone with it either. 

Thanks for any help and advice.

[cristiana]

Hello @OhDeer and Welcome to the Forum

The diagnostic journey varies enormously, depending on where you live. In my own case, and I am posting from England, from memory I think I got the positive blood test results back in March and then had a biopsy in May.  However, this was over ten years ago and pre-COVID, and waiting lists in gastroenterology may mean that it could take longer now.

If you didn't have any obvious symptoms of coeliac disease (such as diarrhea, anaemia etc) all this will have come as quite a surprise/shock.  However, you may have some minor health niggles which you wouldn't associate with coeliac disease which could improve after you go gluten free.   This thread from the forum details some such symptoms:

https://www.celiac.com/celiac-disease/what-are-the-symptoms-of-celiac-disease-r1090/

In my case I suffered from painful migraine headaches for years which cleared after going gluten free. 

Anyway, do come back to us with any further questions 

Cristiana

 

 

Edited December 26, 2023 by cristiana

[knitty kitty]

@OhDeer,

What "something completely unrelated" did you see the doctor for?  

There's over three hundred symptoms related to Celiac Disease.  

Just curious.

 

[trents]

Welcome to the forum, @OhDeer!

It might surprise you to know that many celiacs are asymptomatic. We call them "silent" celaics. I was one of them, essentially. It usually is due to what stage of damage there is to the small bowel villous lining. It is also common, as you learn more about the wide range of symptoms associated with celiac disease, to look back and realize you did have some symptoms but you did not associate them with celiac disease because they were not on your limited list of symptoms many people associate with the condition. Many people, even many doctors (especially if they have been out of med school for a long time) think if you don't have diarrhea you can't have celiac disease.

I'm not sure about your question. What do you mean when you ask what to expect about how long before the onset of symptoms after you go gluten free. If you don't have symptoms now while you are consuming gluten, what leads you to expect that you will develop celiac symptoms after you go gluten free?

[OhDeer]

I think I meant more that  my doctor says she doesn't know why they did the test and who requested it not really that it isn't related as it could be looks like anything can be from that link above. 

I had some small spotting between a period. Turns out I have a small polyp. 

I am also in England. Looks like I'll be waiting a while then! Thank you both for getting back to me it really helps to have someone to ask questions to ask the doctors where not particularly helpful. 

[OhDeer]

3 minutes ago, trents said:

Welcome to the forum, @OhDeer!

It might surprise you to know that many celiacs are asymptomatic. We call them "silent" celaics. I was one of them, essentially. It usually is due to what stage of damage there is to the small bowel villous lining. It is also common, as you learn more about the wide range of symptoms associated with celiac disease, to look back and realize you did have some symptoms but you did not associate them with celiac disease because they were not on your limited list of symptoms many people associate with the condition. Many people, even many doctors (especially if they have been out of med school for a long time) think if you don't have diarrhea you can't have celiac disease.

I'm not sure about your question. What do you mean when you ask what to expect about how long before the onset of symptoms after you go gluten free. If you don't have symptoms now while you are consuming gluten, what leads you to expect that you will develop celiac symptoms after you go gluten free?

I've been reading that when people leave things out of there diet and then accidently have it they then have reaction if they didn't before I guess I mean would that be possible, I know you can't answer for certain as all bodies react differently it's just a thought I have been having and needed to voice it. Thank you again that's really helpful! 

[trents]

9 minutes ago, OhDeer said:

I've been reading that when people leave things out of there diet and then accidently have it they then have reaction if they didn't before I guess I mean would that be possible, I know you can't answer for certain as all bodies react differently it's just a thought I have been having and needed to voice it. Thank you again that's really helpful! 

I can't give you a specific time frame but what I can tell you is that once you become truly consistent in your gluten free diet you will soon lose whatever tolerance you may have had to gluten when you were still consuming it, even if irregularly. When I say "irregularly" I am not meaning the two or three times a year that it might happen accidentally to the dedicated gluten freeer but to those who are more casual in their commitment to gluten free eating and may get some exposure several times weekly. Speaking personally, before I was diagnosed I could eat gluten every meal and only had a little loose stool maybe once a week and an "uneasy" feeling in my gut most of the time. When after diagnosis and when I retired from work I could finally have more control over what I ate and became consistent in eating gluten free. Now, I get violently ill if I get a good slug of gluten like when I accidentally ate two of my wife's wheat biscuits, mistaking them for the gluten free ones she made for me.

[OhDeer]

17 minutes ago, trents said:

I can't give you a specific time frame but what I can tell you is that once you become truly consistent in your gluten free diet you will soon lose whatever tolerance you may have had to gluten when you were still consuming it, even if irregularly. When I say "irregularly" I am not meaning the two or three times a year that it might happen accidentally to the dedicated gluten freeer but to those who are more casual in their commitment to gluten free eating and may get some exposure several times weekly. Speaking personally, before I was diagnosed I could eat gluten every meal and only had a little loose stool maybe once a week and an "uneasy" feeling in my gut most of the time. When after diagnosis and when I retired from work I could finally have more control over what I ate and became consistent in eating gluten free. Now, I get violently ill if I get a good slug of gluten like when I accidentally ate two of my wife's wheat biscuits, mistaking them for the gluten free ones she made for me.

Thank you that is really helpful! Sorry to hear about the wheat biscuits!! 

[yuluyouyue]

47 minutes ago, OhDeer said:

I've been reading that when people leave things out of there diet and then accidently have it they then have reaction if they didn't before I guess I mean would that be possible, I know you can't answer for certain as all bodies react differently it's just a thought I have been having and needed to voice it. Thank you again that's really helpful! 

You are right. Everyone is different. I was a silent celiac, no symptoms before diagnosis. On stric gluten free diet for almost 4 years. Ate a whole wheat cookie by mistake a few months ago. Was expecting a big reaction as everyone said it was what would happen once my body is totally clear of gluten. But... nothing whatsoever. Felt totally fine. Not that I would start cheating now. But good to know if there is contamination while I travel, and cant afford to feel sick. So any generalisations about what to expect are just that, generalisations and might not apply to you. 

[knitty kitty]

@OhDeer,

You may not have gastrointestinal symptoms, but you can still have nutritional deficiencies and symptoms outside of the digestive tract.  

Having low Vitamin D can cause menstrual irregularities.  Insufficient B vitamins like Thiamine B1, Pyridoxine B6, and Cobalamine B12 can also cause problems with our cycles and reproduction.  PCOS is a Thiamine deficiency disorder.

As for accidental gluten exposures: The cells that produce those antibodies against gluten live for about two years.  After that they die off.  If one can be absolutely gluten free during that time, then the next time we're exposed to gluten our immune system has to start from scratch to launch the autoimmune response again.  Very little immune response is seen without repeated exposure over a short period of time.

@yuluyouyue has done well to get to this stage!

But for those exposed to gluten within that time, there are many, many antibody producing cells armed and ready for the least gluten provocation to launch an all out antibody attack.  This is what makes those accidental glutenings so horrible.  And you have to reset the clock and start counting two years from that exposure...

Hope this helps!

[RMJ]

I was tested for celiac disease because of migraines, not gastrointestinal issues.  Turns out I have it (blood tests and biopsy positive). I’m strictly gluten free and still have migraines, but overall feel better, more energy.

In case the biopsy confirms celiac disease you may want to enjoy your favorite gluten-filled foods while you wait for the next steps!

[knitty kitty]

I've collected some interesting studies about migraines...

Thiamine, magnesium, zinc and the other B vitamins help migraines.  I know adding these to my diet has helped relieve my migraines.  

Magnesium as an Important Factor in the Pathogenesis and Treatment of Migraine—From Theory to Practice

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8912646/

 

Dietary intake of thiamine and riboflavin in relation to severe headache or migraine: A cross-sectional survey

https://pubmed.ncbi.nlm.nih.gov/36047917/

 

B vitamins and their combination could reduce migraine headaches: A randomized double-blind controlled trial

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9860208/

 

Dietary zinc intake and migraine in adults: a cross-sectional analysis of the National Health and Nutrition Examination Survey 1999-2004

https://pubmed.ncbi.nlm.nih.gov/36588459/

 

Magnesium as an Important Factor in the Pathogenesis and Treatment of Migraine-From Theory to Practice

https://pubmed.ncbi.nlm.nih.gov/35268064/

 

Hope this helps!

[cristiana]

Also re: migraines, oddly, although the painful ones left me I still get auras which affect my vision for about 15 mins, sometimes less, but I'll settle for those instead of the painful ones.  

[trents]

I get bad headaches/migraines about 1 out of every 4 days. I track it with a spread sheet. I take a high potency B-complex daily and 400 mg of mag glycinate daily as well. Fortunately, sumatriptan works well for me as an analgesic. Nothing else will touch the pain. Not advil, not tylenol. Not even percoset. 

[RMJ]

1 hour ago, cristiana said:

Also re: migraines, oddly, although the painful ones left me I still get auras which affect my vision for about 15 mins, sometimes less, but I'll settle for those instead of the painful ones.  

Same here often just the aura, although I did have a painful one last month.

[knitty kitty]

I've found high dose Thiamine (500 mg thiamine hydrochloride) and magnesium glycinate would improve my migraines and lessen their frequency.  Then I found Allithiamine (TTFD -Tetrahydrofurfuryl disulfide), which can cross the blood brain barrier by itself, and magnesium threonate, which can also cross the blood brain barrier, have prevented most migraines since.  I do get ophthalmic migraines triggered by led lights, flat screen tv's, and computer screens.  My vision goes all gray and sparkly for hours.  Yes, thiamine deficiency and B12 deficiency can affect the optic nerve leaving permanent damage if the deficiencies are not corrected promptly.  

Thiamax is the name brand of a combination of Allithiamine, and magnesium taurate, which also works well to prevent migraines.  

Since the lipid-loving forms of Thiamine called TTFD (Tetrahydrofurfuryl disulfide) can enter cells easily, lower doses of these are used.  

Hope this helps!

[cristiana]

6 hours ago, trents said:

I get bad headaches/migraines about 1 out of every 4 days. I track it with a spread sheet. I take a high potency B-complex daily and 400 mg of mag glycinate daily as well. Fortunately, sumatriptan works well for me as an analgesic. Nothing else will touch the pain. Not advil, not tylenol. Not even percoset. 

Poor you, @trents,  that sounds really tough.  I am glad you have found something that helps you.

Interesting, @RMJ

Thanks for the tip, @knitty kitty.  I never really thought about migraines being caused by deficiencies before.

Edited December 28, 2023 by cristiana

[DebJ14]

I had the gut symptoms, but got that ridiculous diagnosis of irritable bowel. Once that was on the record all the  gastroenterologists I saw afterward never went further to find the cause.  I was one of the people with constipation, not diarrhea.  My doctor swore it could not be celiac.  My biggest issues were neurological including ataxia and debilitating migraines.  Once again I was told it could not be gluten.  And, I always had a painful ulcer or two in my mouth.  The dentist said I needed to change toothpaste.  I tried every brand out there and still got them.  Even as a kid I went to the orthopedic surgeon for the joint pain and chronic tendinitis and to the dermatologist for the never ending red rash.   Only after developing peripheral neuropathy was I tested for both celiac disease and diabetes.  No diabetes, but positive for celiac. 

Then, I was tested for nutritional deficiencies. The list was long and some did not even register because they were so low.  Within days of going gluten-free, the constipation, migraines and mouth ulcers were gone and I lost weight like crazy without trying. Thankfully, they have never returned.   Unfortunately, 16 years later the ataxia is still there, but somewhat improved. My dentist was shocked when I showed him medical journal papers on the aphthous ulcers and gluten.  The joint pain improved for a while, but age, and previous damage, has definitely taken its toll.  

My doctor suggested that I purchase the book, Recognizing Celiac Disease:  Signs, Symptoms, Associated Disorders and Complications by Cleo J Libonati, RN, BSN. It is 300 pages long and was a real eye opener. The intro discusses testing and the next section discusses the symptoms attributable to the various nutrient deficiencies caused by the disease, broken down by body systems and organs.  I lost count of all the symptoms I had besides those above, which I passed off as just a nuisance.

My miscarriages, pre-eclampsia and low birthweight babies should have been a clue to the OB.  I was constantly vomiting as a child.  I was told it was "nerves", which was also apparently the cause of the constant rash. The rashes turned out to be dermatitis herpetiformis. The gastroenterologist also attributed the  constipation and constant belly aches to being a nervous little girl.  I started with a gastroenterologist at the University of Pennsylvania when I was 8.  Then on to the neurologist at Penn, who prescribed Cafergot, then to the dermatologist who prescribed steroid cream, even though the biopsy diagnosis was dermatitis herpetiformis.  Nothing was ever mentioned about going gluten free.  Then to the OB who said it was my poor adherence to his diet (loaded with gluten, I might add) that caused my low birthweight babies and pre-eclampsia.  And, I was accused of not taking my pre-natal vitamins.  I went to multiple orthopedic surgeons  in PA, LA and TX for the joints and tendons and to multiple dentists in those states who all were wrong.  

If I had been diagnosed at 8 instead of at 54 I can't imagine how different my life would have been.  To feel better at 54 than in my 20's and 30's just makes me feel sad for everything I missed out on because I was in bed with a migraine, unable to walk because the joint pain was so bad, home puking my brains out, especially on holidays like Thanksgiving or being miserable trying to eat or drink anything because of the mouth sores.

Some people are devastated when they get the diagnosis.  I look back at that day as the best day of my life.  It took me a couple years to completely heal my gut and restore all the nutrients. Several were still dangerously low after a couple years, so I had epigenetic testing done and found that the cause was genetic.  The doses were upped accordingly and my levels finally went up, but I have to take massive doses for the rest of my life.  January 4, 2024 will be the 17th anniversary of my diagnosis.  I will be forever grateful to the doc who had a 20 page questionnaire that he actually read, and he actually listened to my tale of woe and finally put all the pieces together.

If I accidentally get glutened now I have projectile vomiting and explosive diarrhea within a half hour.  It generally last 3-4 hours and I feel like I was hit by a truck for several days. By the next day, my rash is blooming.  Thankfully, I have not had a migraine recur.

[trents]

Good story, @DebJ14, and encourging! Thanks for sharing.