borderline positive for celiacs disease?

Digestive health
1

Hi, I am new to the forum and i would just love some help! I am a 19 year old female.

I have recently been quite sick.

At first, I started to bloat after meals, really bad stomach ache, and have some nausea and diarrhea almost instantly after eating. Then I would wake up in the early hours of the morning (usually around 6.00 or 7.00) with crippling stomach pain and would need to use the bathroom. I would suffer from diarrhea up to 5 times a day.

I saw my doctor who sent off a pathology report to check for any parasites which came back negative. I was then given the IBS diagnosis and had my blood tested for inflammatory diseases and thyroid which also came back negative. I started to notice that after eating certain foods containing wheat, (foods such as tarts, bread and cake) I would suffer terrible stomach aches, cramping, gurgling, bloating, flatulence, and then I would suffer from extremely loose stools (D) .Although i'm at a normal weight, i have dropped a couple of pounds due to the change in bowel habits. And just recently I have noticed when I eat something containing gluten I suffer from very painful mouth ulcers.

So, after going back to my doctor, she decided to order a blood test to check for celiacs. So I have been eating gluten, and the results came back borderline positive for celiacs! I am just so concerned because I have never had this issue before!! What exactly does this even mean?

I am due for a repeat blood test at the end of this week, and then I will be sure to follow up with my doctor. But I have like a million unanswered questions so if anyone has any experiences I would appreciate it very much!

Does this mean I would need to go on a gluten free diet for life?

what exactly does borderline positive mean? Is it that they caught it early before any further damage was to occur, or that I can prevent the illness?

I have also read that it is a genetic disease. So does this mean my family are at risk?

I apologise for the long post! But i would love to hear your experiences and any help would be much appreciated!!

Thank you!

2

Hi there. I don't know if you saw my post from a couple of days ago but I too just got borderline positive results. I'm waiting to hear back from my doctor about further tests. Keep in touch and let me know how you get on. Regarding the genetic link, there's a 10% chance of close family members being affected also. My brother is a coeliac so it looks like I'm possibly that 10% chance! I'm sure you will get many helpful replies but just wanted you to know I'm in the same place as you right now. Take care.

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Hi, thanks for the quick reply! I've just come back from my repeat blood test, the results should be back by next week. My family have been really supportive, but I'm still at a loss right now. Do you happen to know what the next steps are? I've heard that you usually have to undergo an upper endoscopy and a few biopsy's to confirm it, but I think I would much rather go without rolleyes

But anyways, hope your well and let me know how you get on.

4

Just an update, my blood results have come back with another weak positive, so I've booked a follow up with the doc. Tbh, my sister was tested for celiacs a year ago because she had most of the symptoms but mainly constipation and her results came back negative although she did not eat gluten prior to the blood test, so shewas diagnosed with IBS. My mum was tested too because she was anaemic for the second time in two years but her results also came back negative. So I don't think its genetics? blehh.

But anyways, wish me luck!

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I actually went to the GP with another issue (lightheadedness) and it surprised me when they tested for celiac disease amongst other things - but it came back negative. But recently I started making my own bread and eating more of it than normal. I started with bouts of wind and explosive diarrhoea. It took the 3rd baking session before I realised that the two were related.

I've read that you can also have symptoms even if the test is negative but this is likely to be gluten intolerance as opposed to full blown celiac disease. It's all very confusing. I only know I can't have much of my lovely home made bread - if any.

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Its so ironic because I actually started showing symptoms when I started baking in June. However, I recently had an endoscopy done after both my lab results came back borderline positive. The results to the endoscopy appeared normal. I gave a trial of the gluten free diet after the endoscopy, and it helped so much with the bloating and loose stools and whenever I was exposed to some gluten I would be sick again. ( I had 4 pringles and i was in agony and had explosive stools) I agree that it is possible to have negative results and a positive biopsy. There is so much conflicting results with the celiac panel. My GP said that the biopsy is the main diagnostic and if that came back negative then celiac disease has been ruled out. So after all this, I find that I have really bad IBS and have a gluten sensitivity, I've also been prescribed mebeverine for it and it just doesn't seem to help. I was told to cut down on gluten and even continue the gluten free diet. It was my choice, but personally, I think theres no point going gluten free if there is no damage occurring in my small intestine. Your symptoms sound like it needs investigating. I would definitely followup with your GP and push for a scope, but continue to eat gluten in the meantime! Good Luck.

7

Thanks batman. Going by what you said maybe the first thing would be for me to push for an actual biopsy. I just worry about coming across like a hypochondriac!

But even if there is no actual damage being done, the symptoms are enough to persuade me to watch what I eat. The first time I made the bread I thought I must have given myself food poisoning when I kneaded the dough. So I was really scrupulous the next couple of times. But it happened again on each occasion. I am going to investigate the slow proving method - ie leaving the dough overnight. Apparently it minimises the gluten reaction. I know there are gluten free products but I tend not to like them.

Of course it could also be a wheat allergy - digestives used to give me headaches.

Off now to look up mebeverine... I'll make a good hypochondriac yet!