Am I or am I not celiac???

Molly · Joined: 25 Sep 2007 Posts: 3 Location: Ireland

Hi all,

I’m new to this board and I am hoping to get some help/information/confirmation regarding celiac disease. I’ll apologise in advance for such a long message.

I’m a 37 woman and have been continuously unwell for nearly 4 years. My GP referred me to a gastroenterologist about 3 years ago. I have had numerous tests but nothing has been confirmed so they said it’s probably IBS but to be honest every time I have an appointment in the hospital I see a different registrar and each of them tell me something different so at this stage I don’t exactly trust them.

Anyway, I’m looking for your opinion on whether you think I might have Celiac Disease? My symptoms are vomiting, nausea, mild to extreme abdominal pain, bloating, constipation, fatigue, B12 deficient (I receive an injection for this once a month), mild to severe joint pain (I have occasionally been put on medication for this), muscle spasm/cramping (again, I have been put on medication for this), headache/migraines, occasional sore tongue and mouth, I bruise easy and my concentration wouldn’t be 100% (sometimes I feel a bit cloudy).

Recently after being extremely unwell for over two months my GP suggested that I go on a Gluten Free diet. I spent some time researching this and all the information seems to lead to Celiac Diseases web sites. I have been on a Gluten Free diet for approx 9 weeks and feel better than I have in nearly 4 years, I made a few mistakes along the way i.e. eating something I was unsure about and soon paid the price but mostly I have felt fantastic. I feel “normal” for the 1st time in years and I now feel I can make plans for the future i.e. nights out, weekends away, holidays, courses, etc…

I suppose the reason I’m posting this message is I’m a bit confused at the moment. I had an appointment with the gastroenterologist (well one of his team) this morning. I explained that I was on the diet and feel great. He said they had done a (as in one) blood test and this did not show that I was celiac so he said that they won’t “label me as celiac” but I should just continue the diet and not eat anything with gluten, he then said I don’t need any further visits to see the gastroenterologist unless I become very ill again. So, I’m now confused. Am I a celiac? Am I gluten intolerant or what am I? (I know I should have asked these questions while in the hospital this morning but I don’t have much fate in what they say and I was caught off guard). Are they reluctant to “label” people as celiac? He mentioned that if I was labelled a celiac it would affect insurance, mortgages etc… could this be why he said I was not celiac or are they reluctant to put a diagnosis on it?

If anyone could give me some information or your opinion on whether or not you think I might be celiac? Any advice or information to help me to make sense of all this it would very, very much appreciate it.

cruelshoes · Joined: 23 Sep 2005 Posts: 2688 Location: Washington State

Hi, Molly. Many of your symptoms are consistent with Celiac. It would be interesting to know exactly what bloodwork was run and what the results were. Many doctors don't run the right tests, and don't know how to interpret the ones they do run. Can you get copies of your bloodwork results and post them here?

Here is a link that explains the difference between CD and Non-CD gluten sensitivity. For all intents and purposes, the treatment is the same - a GF diet. Then NCGS people just have the unfortunate circumstance of not being able to get the bloodwork to show a positive result.

I don't know if the insurance companies in IRL are the same as they are in the US. Group insurance (provided by an employer) tends not to be an issue as far as a celiac diagnosis goes. But there have been people recently that have had difficulty getting private insurance with a CD diagnosis in their medical chart.

Just so you know, 9 weeks off of gluten will make it harder to get positive results if you were to have the bloodwork and biopsies now. You may have to resume eating gluten for some period of time (ie. months) in order to be positive. For many (like me) it takes years for the numbers to drop, but for people that heal quickly it can happen much more quickly. Here is some information on gluten challenge.

If it means anything, you are in one of the best countries as far as being gluten intollerant goes. There are many that believe that Ireland is where celiac started. Awareness there is much higher than it is here in the United States. From what hear, eating out is much easier there than it is here. If you go into a restaurant here and ask about gluten in the food you are likely to get looked at like you have 2 heads.

I hope to hear more from you.
_________________
-Colleen
Dx 8/05 via bloodwork/biopsy
10-YO son Dx 11/05 via bloodwork/biopsy
Daughters (12 and 2) have neg. bloodwork

A woman is like a tea bag-you never know how strong she is until she gets in hot water. - Eleanor Roosevelt

celiacmaine-iac · Joined: 19 Dec 2007 Posts: 836 Location: Maine

Hi Molly,
Colleen gave you great info. I don't know anything about how things are done in Ireland. When you refer to insurance, do you mean health insurance or life insurance? I just assumed that Ireland would be under Great Britain's health plan.

I'm not sure why they would not give you an official diagnosis, unless they are not satisfied with subjective data, and want to see the cold, hard facts. My experience sounds a lot like yours. I had a blood test (yes, just one, like you), skin biopsy (done wrong apparently. they took the sample from a lesion, not beside one.) and endoscopy (only 7 samples). I went GF as an experiment and improved dramatically, and "unimproved" dramatically with the gluten challenge for the endo. The doc who did the endo, did see some inflammation in one area, so my damage may be really patchy, and may have healed enough during the GF time to skew the results.

I only underwent the endo for the sake of my children and grandchildren. It is important for 1st degree relatives of celiacs to be tested. I felt like the kids docs would be more persuaded to test based on an official diagnosis from me. Anyway, all my tests were negative. My doctor, however, diagnosed me based on my family history(several celiacs in first degree relatives) my symptoms, and my response to a GF diet and the gluten challenge. It's a rare thing to have a doc do that.

It would be inappropriate for me to say whether or not I think you have CD, but I had most of your symptoms. I guess it would be up to you whether you decide to pursue this further. It's a personal decision that everyone has to make for themself. Best of luck in your journey, and welcome to the board. I'm new to the board myself, but used it constantly (lurking, learning) during my diagnostic period. The people on here are a wealth of information, and are really supportive.

Steph

Molly · Joined: 25 Sep 2007 Posts: 3 Location: Ireland

Hi Colleen and Steph,

Thank you so much for your replies and sorry for my delay in replying.

Colleen after reading your message I contacted the hospital to ask what blood tests had been carried out and ask if a biopsy had been taken. It seems that not all of the correct blood tests were carried out and it's mentioned on my file that I should have had follow up blood tests based on the results of the blood tests but these were never done. Also it mentioned on my file that they were unable to take a biopsy and had to remove the scope - NONE of this infomation was ever passed on to me and yet they decided to discharge me from the hospital without knowing what was wrong.

I have made a new appointment to see the doctors in the hospital, it will be on the 28th of January (I'm extrememly surprised I got an appointment so soon, we'd usually have to wait months for an appointment.) I am doing as much research as possible before I go back to the hospital is order to ask the right questions. I want them to take me serious and give me some answers.

Again, I would like to thank you for replying to my message and any help or suggestion you may have regarding this would be very much appreciated.

Kindest regards,

Molly.

cultureslayer · Joined: 07 Apr 2006 Posts: 769 Location: NC

Does the gov. give out free gluten free food in your country to the diagnosed? That's the only reason to keep on going to the docs IMO.

To get additional bloodwork and a biopsy you will have to eat gluten. Do you really want to make yourself sick again? They can't do anything to give you an official diagnosis without you eating gluten.
_________________
Lauren
Pain is inevitable; suffering is optional.

Molly · Joined: 25 Sep 2007 Posts: 3 Location: Ireland

Hi Lauren,

As far as I am aware we cannot get free gluten free food - I think we can claim some tax back if we keep receipts and claim them back with our medical expenses.

I supposed I want to find out if I am celiac for a few reasons 1) I don't want to stay on a gluten free diet for the rest of my life if I don't really have too (maybe I'm just wheat intolerant). 2) I want to know if there are other medical problems I need to look out for and maybe doing something now to prevent them and 3) for my family - I have a teenage son, mam and dad, sisters, brother, nieces and nephews - I'd like to know if they need to be tested and if they are at a very high risk of becoming celiac.

I'd HATE the idea of having to eat gluten again and becoming so unwell. Maybe when I go back to the hospital someone might actually read my file correctly and might be able to give me some answers. I think if they suggested that I go back eating gluten I think I'd say no and just stick to a GF diet. It's not worth the pain.

cultureslayer · Joined: 07 Apr 2006 Posts: 769 Location: NC

The absolute ONLY way to get accurate tests is when you are eating gluten.

In fact, they use the same tests to determine if you are sticking to the GF diet. If the numbers come back normal, you are.

I am in the same situation. No formal diagnosis, but I know it makes me feel very tired, disoriented, and the more usual stomach issues when I eat gluten.

If you have antibodies to something you shouldn't, then you are more likely to develop other allergies/autoimmune issues as well. In the US with medical privacy laws you can just tell them a relative has celiac (since they don't understand gluten intolerant) and you son's doc can't legally go check your records to verify. I am guessing it's similar there. They don't require a print out of your results to test your relatives.

Just tell your son's doc you are celiac, and avoid having to start eating gluten again.

Tell your other relatives, but don't expect them to do anything. My mother has had stomach problems for years and would not get tested until her doc mentioned it to her, and she NEVER told the doc about me. Most people would rather suffer than change their diet so they don't even get tested.
_________________
Lauren
Pain is inevitable; suffering is optional.