Wheat allergy test or wait for endoscopes

[Zalira]

Hi, I'm just after some advice/ opinions. Here is my background story: 

I've always had tummy issues and for years have said 'I can't eat bread, it doesn't agree with me' so I started to cut it out of my diet. Last year my dad was diagnosed with celiac disease. When he was diagnosed I was tested for celiac antibodies. I think they only did one test and it came back negative. I wasn't eating a lot of gluten around the time but didn't know I should be. 

6 months ago I went through a very stressful life event. I lost my appetite and didn't eat a lot for about 2 weeks. When I started eating properly again I had a lot of stomach pain, changed bowel movements, headaches, fatigue. In about 4 months or so, I've lost 21 kilograms (over 46lb) without trying. My Doctor did a celiac gene test and it was positive.

I'm on the waiting list for colonoscopy and gastroscopy. I've been told this will be in December. So I started to make sure I was eating gluten each day to ensure I had enough before the endoscopes. I experienced additional symptoms such as a racing heart, aching joints, tingling in my fingers, intense fatique, sore throat, mucus covered stools and more. 

About a month ago, my doctor told me to stop eating gluten because I was getting all those symptoms and losing so much weight. He thought it was gluten related. 

I have been off gluten for a month and have seen a reduction in symptoms but still get a sore, gurgling belly from time to time and a sore throat, sometimes with an ulcer, tingling lips, headaches and fatique. Sometimes it is after eating a fruit salad or salad so I didn't think I would have been 'glutened' I tend to have unformed stools, but not watery. 

Last night my husband made a chicken and vegetable stir fry. After eating it my stomach started gurgling and feeling upset. I then got a sore throat that felt very irritated. I started coughing a lot and felt a sort of choking feeling. I could still breathe fine though. I checked my throat and it was red raw. My husband then realized that the bottled stir fry sauce had soy sauce made from wheat. 

This morning I woke up with a headache and no energy. Tonight I've now got an ulcer on my throat.

 

My question is.. Should I ask to be tested for a wheat allergy or just wait for the endoscopes? Are these just all signs of celiac disease or something else. 

 

I assume I'll have to recommence eating gluten before these tests. I have had a red sore throat on and off for a few months now but not the choking feeling and cough. They've tested my thyroid, swabbed my throat for different things and all came back negative. 

Thanks for reading and for your advice

 

[squirmingitch]

You certainly have celiac disease symptoms. Yes, you will have to eat gluten every day for 2 weeks before the endoscopy.

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But the throat thing worries me, that you feel like you're choking & the ulcer on your throat. That sounds more like allergy. I worry that this could develop into anaphylaxis even the next time you have wheat. You DO need to get tested for a wheat allergy. It IS possible to have both celiac disease and a wheat allergy concurrently. If you are allergic to wheat then you will not be able to do a gluten challenge AND will need an epi pen to carry with you at all times. 

There are others on here who are much more versed in allergy signs & symptoms than I. I imagine they will be on as they get time to give you more advice.

[plumbago]

You certainly have celiac disease symptoms. Yes, you will have to eat gluten every day for 2 weeks before the endoscopy.

The link you provided after that discusses the gluten challenge (serology), not how to eat before an endoscopy to check for celiac disease. [EDIT: Just re-read it. It does say to eat gluten 2 weeks prior to an endoscopy] The last sentence recommends moving right to an endoscopy if reaction to gluten is severe. If I were this person, I would consider insisting on bumping up the date of my endoscopy for health reasons.

Otherwise, I would be interested in hearing from others - especially medical professionals working on autoimmune diseases such as celiac disease - on this, because my tendency is to think that 3-5 weeks out from an endoscopy, the small intestine would probably not heal in such a short amount of time if the patient is not eating gluten. It sounds like she has some quite serious immediate health issues. While I understand the need to continue consuming gluten before tests, I always thought that was before serology tests and perhaps for the endoscopy it is less crucial to be consuming gluten, again especially if there are some immediate health issues. It is worth more research, that is for sure.

Plumbago

[squirmingitch]

I am concerned that she has a wheat allergy & that takes precedence over doing a challenge for an endoscopy for celiac. If she does test out to have a wheat allergy then there is no point in her risking eating gluten for an endoscopy as it would be rather moot at that point as the end will be the same --- NO WHEAT which basically boils down to eat gluten free for the rest of her life. I'm betting she has celiac being as the family history is there, she has the genes, and she has the symptoms.

If she is dx'd with wheat allergy there is no need for an official celiac dx in addition. It's not worth the risk of having an anaphylactic reaction.

[plumbago]

I completely skipped over the wheat allergy. For some people, it is a life-threatening event that is true.

(I see she is not scheduled for endoscopy but rather colonoscopy and gastroscopy. Maybe the gastroscopy is what I would normally call an endoscopy. In any case, biopsies should be taken if testing for celiac disease.)

Even if I had a wheat allergy, I'd still want to know if I had celiac disease, for sure. I've known people who tested positive for wheat allergy but eventually de-sensitized to it and resumed eating it.

But yeah, get the allergy test for wheat.

 

[StephanieL]

It would be unlikely that you would have developed a wheat allergy after just a month off of wheat. It is not impossible but not likely especially if you haven't had those symptoms prior.   You could get the allergy test but know it is HIGHLY inaccurate (50/50 on a positive test).  

 

Is your Dr. dx you based on the return of symptoms and your genetic test?  Any possibility you could get blood testing now and even better the endoscopy?

[Zalira]

Thanks for all the advice. I've booked an appointment with my doctor this afternoon. 

I believe I'm having a Gastroscope (upper endoscope) and colonoscopy. I'm on the waiting list and was told it would be around mid December.. But they haven't given me a definitive date. 

My my doctor hasn't diagnosed me. He said it sounded as though it could be gluten causing my symptoms as when I challenged my system by having bread each day for a few days, I started getting very sore joints, a racing heart, sore throat, numb arm etc. He was also concerned as I kept losing weight. I was losing it so fast. So he said to stop eating gluten until closer to the endoscope and colonoscopy. He also called the head of surgery who said they would be doing biopsies do I didn't need to eat gluten for long before the procedure. 

I have seen an improvement in my symptoms in the last month although I occasionally get stomach cramps that have me doubled over. 

Thanks again for all your help xx

[Zalira]

Just a follow up. I went to my sister's dr as I couldn't get into mine and he wasn't concerned about allergies. He said to just be vigilant to not eat gluten. I have been doubled over with pain lately and he was asking if there is a family history of IBD. He said I really need to get the scopes done to check for celiac and IBD. So the waiting continues. I haven't heard from the hospital exactly when it will be but I hope it is soon as I'm starting to lose weight again after stabilizing for a while. I'm also getting a lot of stomach pain lately. 

 

Thanks again for your advice