35 finding out I could have celiac. Scared, worried confused

[Katie255]

Hi, im super new to this and wondering if someone can offer some support.  Went to doctors feeling tired, thought i was anemic again or was it just that I was shattered from 3 children, house, full time work.....she checked also for celiac and my blood test came back in the 600's...when she said normal range was 0-20.  Will be referring me to gastroenterology for biopsy etc.  Checked today and my referral has not been received, so rang doctors back and explained this and they said will take a little while to get to them and the waiting list can be over a year anyway......ive not heared or read of anyone with a high reading such as mine, which scares me thinking it could be much worse than celiac......but then i come back down from panic mode once i've established that i have no other symptoms other than being tired.  I know everything points more to celiac......i was tiny as a child, late through puberty, always cold, anemic, dry skin.......i just feel lost and a bit alone. Thanks, Katie :.(

[trents]

Welcome to the forum, Katie255!

Believe me, your reaction to the news given to you by the physician is a very common one. You are not alone.

Your antibody test score is, I think, the highest I have run across. However, it is not necessarily the case that high numbers equate to a more serious problem. If you are not experiencing GI distress that may be a sign that you caught the disease in a fairly early stage before there has been great damage to the villi that line the small bowel. I can't be sure of this but those are my thoughts.

The other option you have is to forego the endoscopy/biopsy and trial a gluten free diet. If you start to feel better, then you have your answer. There is probably not much of a chance that you don't have celiac disease with numbers that high so the endoscopy/biopsy may just be a formality. However, in some countries, like the UK for instance, there may be a stipend available to offset the cost of gluten-free food at a  if you have an official diagnosis. If, however, you decide to go forward with the biopsy (which is the gold standard confirmation of celiac disease) you must not start removing gluten from your diet until that is complete. If you will not be able to get the endoscopy/biopsy done for months, you could start on a gluten-free diet now but you would need to go back to eating regular amounts of gluten at least two weeks before the procedure to ensure valid results.

One thing I would definitely recommend NOW is that you purchase some high potency vitamin and mineral supplements to address the anemia. Multiple vitamin, B-complex, B12, D3, magnesium and iron. The small bowel villi are responsible for absorbing all the nutrients in or diet so when that area gets damaged by celiac inflammation, the efficiency of nutrient goes way down. Vitamins and supplements can help offset this.

Edited January 31, 2023 by trents

[Wheatwacked]

29 minutes ago, Katie255 said:

waiting list can be over a year

Absolutely not acceptable. You will have to continue suffering needlessly while you have to continue to eat gluten for another year!? 

coeliac.org.uk: Coeliac disease blood tests and biopsy

"If you have a positive blood test for coeliac disease, your GP will refer you to a gut specialist – a gastroenterologist. Usually, a biopsy of the gut is carried out to confirm whether or not you have coeliac disease but in some cases, both adults and children can be diagnosed based on blood tests without the need for a biopsy."

I believe the parameters are greater than 10X the normal test results, less than 65 years old and no uncommon symptoms. 

17 minutes ago, trents said:

Multiple vitamin, B-complex, B12, D3, magnesium and iron.

I would add Choline, also.   Could we be overlooking a potential choline crisis in the United Kingdom?  

[Katie255]

Thankyou both for your fast responses and support.  over a year wait just to see the gastroenterologist, then however how long for a scope and eventual diagnosis.....I'm afraid to stop eating gluten completely as probably wont want to restart eating it once I stop.  Only niggly thought is the continued damage I'm doing to my body....but then again whats another year potentially when this could have been for the last 30 odd years.  My brain is continually arguing points like this at the moment.  I actually bought vitamins today so hoping they help soon too.  Ive also stopped googling as I diagnosed myself with all sorts, mainly a cancer as this can give high readings for antibodies apparently. Also worried for my daughter...shes 13 and wears age 9-10 clothes....mentioned this to GP who said lets get you sorted first and then we can look at your children.....i care more for them than myself and want to makesure I do the best for them too ....sorry i probs sound neurotic

[trents]

8 minutes ago, Katie255 said:

Thankyou both for your fast responses and support.  over a year wait just to see the gastroenterologist, then however how long for a scope and eventual diagnosis.....I'm afraid to stop eating gluten completely as probably wont want to restart eating it once I stop.  Only niggly thought is the continued damage I'm doing to my body....but then again whats another year potentially when this could have been for the last 30 odd years.  My brain is continually arguing points like this at the moment.  I actually bought vitamins today so hoping they help soon too.  Ive also stopped googling as I diagnosed myself with all sorts, mainly a cancer as this can give high readings for antibodies apparently. Also worried for my daughter...shes 13 and wears age 9-10 clothes....mentioned this to GP who said lets get you sorted first and then we can look at your children.....i care more for them than myself and want to makesure I do the best for them too ....sorry i probs sound neurotic

Two recent large studies found that almost half of the first degree relatives (parents, siblings, children) of those with active celiac disease will have or will develop active celiac disease themselves. Are you in the UK by chance? I ask that because the way out there scheduling for followup procedures by specialists is well known to be a problem in that health care system. As Wheatwacked alluded to, it has been common practice during the pandemic in the UK for doctors to forego the endoscopy/biopsy and to declare an official celiac diagnosis when the blood antibody test numbers were 10x normal which yours clearly are. You might want to talk to your physician about that.

[Scott Adams]

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[knitty kitty]

@Katie255,

Welcome to the forum! 

Since Celiac Disease is inherited, you could get genetic tests for your family.   

The level of antibodies does not correlate with the amount of damage in the intestines.  High levels are indicative of a strong immune response early on in the development of Celiac.  Antibody levels can become lower as the body settles into a state of chronic inflammation and malnutrition.  Anemia and Diabetes can cause false negatives. 

I agree with @Scott Adams.  Get clarification from your doctor if he can make a diagnosis on antibody tests and DNA tests.  Eliminating gluten from the diet as soon as possible is important to preserve your health.

I quit eating gluten on my own.  But to get a proper diagnosis, I had to do a gluten challenge.  I got so sick I couldn't last a week.  The immune response can be more severe after reintroducing gluten.  

Keep us posted on your progress!

[Wheatwacked]

17 hours ago, Katie255 said:

GP who said lets get you sorted first and then we can look at your children

Wrong answer.  The longer you delay the more damage to repair.  And if they test positive, it is another risk factor for your own diagnosis as a 1st degree relative of a certified child. You whole family should go GFD, in my opinion, regardless of the doctors. This is only a medical issue as long as you eat gluten. Once you stop, and with all the essential vitamins you will heal.  In the future, when you're tests show negative, your doctor will say you don't have Celiac Disease. But if you start again, it will come back, maybe not as badly but as silent celiac at best. 

For misdiagnosing yourself on the internet, malnutrion and autoimmune responses to gluten can immitate over 200 different syndromes and symptoms. I had 19. In the end logic overcame my denial. What were the chances of me having 19 different symptoms caused by 19 different diseases. It is not you that is crazy, it is everyone else whose lizard brains are protecting their addictions to wheat. We are a risk factor to their denial. More to look at: 

 

[trents]

Ideally, all first degree relative relatives should be tested and tested regularly. In the real world, however, you are not likely to find a physician who will test in the absence of symptoms. The only other option would be to purchase home test kits from third party entities such as Imaware.

[CSarah88]

Hi Katie,

I was diagnosed in college while away from home and I can understand being scared! My number for my blood works was also extremely high, greater than 600 but after only a year of being gluten free my count was only 4 and I am so much healthier. I wish you the best moving forward and try to get the biopsy as soon as possible so you can start your gluten free journey!

[cristiana]

Hi Katie225

I'm a British coeliac and read your posts.  I'm so sorry you are going through all of this especially it can take a very long time to be referred at the moment.

I know a few people who had all the symptoms of coeliac and for whatever reason decided to just go gluten free.  Completely understandable if you are feeling very unwell and don't want to have to go through a gluten challenge.

However, I just wanted to make you aware that if you can get a proper diagnosis in the UK the NHS puts in place quite a bit of extra support.  Although care varies region to region, it should include a referral to a nutritionist, annual blood tests to check for compliance and other possible complications, an annual appointment with a gastroenterologist to check you are doing OK, and in some cases gluten-free prescriptions which can bring down the cost of gluten-free staples like pasta and bread considerably.   Also, DEXA bone scans to make sure you aren't developing osteopenia/osteoporosis.   

Regarding the long wait:  I was wondering if your doctor can be persuaded to test and refer your children, whether they might be seen quicker by a pediatrician gastroenterologist?  Or whether you might be able to go private for your own referral.   I am afraid it isn't cheap, but I did go private when I was diagnosed and it cut the waiting time considerably before COVID.  I don't know how placed UK consultants are now with waiting lists, it may not make much difference, but perhaps it would be worth looking into.

One other thought might be to ring the Coeliac UK helpline.  They might be able to give you some tips.  I've rung them in the past about various things and they have always been very helpful.

Wishing you the very best, and I hope you make some progress soon.

Cristiana

 

[Katie255]

Thankyou all for your responses and advice.  bit of an update: I have since now had the biopsies taken and awaiting results and have had all 3 children tested.  inital results show 2 out of my 3 children have it.  All still waiting to see a gastro consultant but the children have appointments next month as they see children quicker, and I will hear once ive had the results of my biopsies I believe.  Im having good days and bad days.  Im finding social gatherings very difficult as just feel awkward and sometimes id just rather not go.  Ive just got to change my head around and be positive about what I can eat instead of focusing on everything i cant i guess.  atleast im losing weight as no longer eating sweets or chocolate, or cakes or biscuits really.  I thought I was allowed to drink gluten free lager as it states on the bottle but later read that this is still a no no for people with celiac....huffff! guess ill have to start liking wine instead!

[Wheatwacked]

49 minutes ago, Katie255 said:

I was allowed to drink gluten free lager

There is gluten free beer made with sourgham or other gluten free sources which should be Ok  and then there is  gluten removed beer. 

Is Barley-Based “Gluten-Removed” Beer Safe for People with Celiac  Disease? "Regardless, neither the TTB nor Health Canada is allowing barley-based “gluten-removed” beer to be labeled gluten-free based on ELISA testing.  , According to Health Canada, the beers they have tested with LC-MS have all contained residual gluten fragments."

[Scott Adams]

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