Waiting for urgent referral.

[Fluka66]

Hello. Any help would really steady my nerves right now.

I realised recently that certain food left me in agonising pain so eliminated from my diet. I also have a swollen lymph node. My very caring Dr did some blood tests and I went back the other day to see another equally caring Dr . She looked at the test results one result has come back with something wrong. It came very fast so I'm afraid I didn't catch what it was. Anyway the urgent referral to ENT. She did say as I had already eliminated gluten it wouldn't say anything on the results and neither Drs nor I were prepared to reintroduce gluten . I've just had some tomato soup and again in agony only thinking this must have aggravated maybe existing problems.

Does anyone know what I'm facing now ? My swollen lymph node , pain when eating gluten and lactose and I'm assuming the acidity of tomatoes triggering pain. 

I'm trying to stay calm and to be honest I've been in intolerable pain at times rendering me unable to stand up straight but I've always just got on with it . Guess I'm reaching out and would really appreciate any wise or unwise words at this stage.

Wishing you all the very best as you live with this illness.

Fluka66

 

[trents]

Welcome to the forum community, @Fluka66!

Did you realize that the vast majority of all canned soups use wheat starch as a thickener, including such common commodities as Campbell's tomato soup?

[Fluka66]

Thank you for your welcome and reply. 

Yes I've been carefully reading labels looking for everything in bold and have been amazed by what I have seen.

However Heinz tomato and basil soup is wheat free so I m thinking I already have ulcers?  The acid could be causing the pain . My pain always starts in one place then follows the same route through me . GP confirmed that is the route of our digestive system. 

So much pain from stabbing to tearing. If I throw in milk with lactose it's horrific. 

Many years of it now, won't go into details but been seeing a consultant for a supposedly different problem .

Wondering what damage has been done over the years.

Many thanks for your reply.

Wishing you the very best.

 

 

[Scott Adams]

Be sure all testing is completed before going gluten-free, that is, unless you are certain that gluten is the culprit and have decided not to eat it again.

This article has some detailed information on how to be 100% gluten-free, so it may be helpful (be sure to also read the comments section.):

 

 

[Fluka66]

Thank you very much for your reply. I hadn't heard of celiac disease but began to notice a pattern of pain. I've been on the floor more than once with agonising pain but this was always put down to another abdominal problem consequently I've been on a roundabout of backwards and forwards with another consultant for many years. I originally questioned this diagnosis but was assured it was the reason for my pain. Many years later the consultant gave up and I had a new GP. I started to cut out certain food types ,reading packets then really started to cut out wheat and went lactose free. After a month I reintroduced these in one meal and ended screaming in agony the tearing and bloating pain. With this info and a swollen lymph node in my neck I went back to the GP. 

I have a referral now . I have also found out that acidic food is causing the terrible pain . My thoughts are this is irritating any ulcers. I'm hoping that after a decade the outlook isn't all bad. My blood test came back with a high marker but I didn't catch what it was. My GP and I have agreed that I won't go back on wheat just for the test due to the pain , my swollen lymph node and blood test results. 

Trying to remain calm for the referral and perhaps needed to be more forceful all those years ago but I'm not assertive and consultants can be overwhelming.

Many thanks for your reply . Wishing you all the best.

[trents]

But if you have been off of wheat for a period of weeks/months leading up to the testing it will likely turn out to be negative for celiac disease, even if you actually have celiac disease. Given your symptoms when consuming gluten, we certainly understand your reluctance to undergo  the "gluten challenge" before testing but you need to understand that the testing may be a waste of time if you don't. What are you going to do if it is negative for celiac disease? Are you going to go back to merrily eating wheat/barley/rye products while living in pain and destroying your health? You will be in a conundrum. Do I or do I not? And you will likely have a difficult time being consistent with your diet.

Celiac disease causes inflammation to the small bowel villous lining when gluten containing grains are consumed. This inflammation produces certain antibodies that can be detected in the blood after they reach a certain level, which takes weeks or months after the onset of the disease. If gluten is stopped or drastically reduced, the inflammation begins to decrease and so do the antibodies. Before long, their low levels are not detectable by testing and the antibody blood tests done for diagnosing celiac disease will be negative.

Over time, this inflammation wears down the billions of microscopic, finger-like projections that make up the lining and form the nutrient absorbing layer of the small bowel where all the nutrition in our food is absorbed. As the villi bet worn down, vitamin and mineral deficiencies typically develop because absorption is compromised. An endoscopy with biopsy of the small bowel lining to microscopically examine this damage is usually the second stage of celiac disease diagnosis. However, when people cut out gluten or cut back on it significantly ahead of time before the biopsy is done, the villous lining has already experienced some healing and the microscopic examination may be negative or inconclusive.

I'm not trying to tell you what to do I just want you to understand what the consequences of going gluten free ahead of testing are as far as test results go so that you will either not waste your time in having the tests done or will be prepared for negative test results and the impact that will have on your dietary decisions. And, who are these "consultants" you keep talking about and what are their qualifications? You are in the unenviable position that many who joint this forum have found themselves in. Namely, having begun a gluten free diet before getting a proper diagnosis but unwilling to enter into the gluten challenge for valid testing because of the severity of the symptoms it would cause them.

[Fluka66]

Thank you again for your reply and comments which I have read carefully as I appreciate any input at this stage.

I'm tending to listen to what my body wants me to do, having been in agony for many years any respite has been welcome and avoiding all wheat and lactose has thankfully brought this. 

When in pain before I was seen by a number of gynacologists as I had 22 fibroids and had an operation 13 years ago to shrink them . However the pain remained and intensified to the point over the years where I began passing out. I was in and out of a&e during covid when waiting rooms where empty.

My present diet is the only thing that's given me any hope for the future. As I say I had never heard of celiac disease before starting so I guess had this not come up in a conversation I would just have carried on. It was the swollen lymph node that sent me to a boots pharmacist who immediately sent me to a&e where a Dr asked questions prescribed antibiotics and then back to my GP.

I'm now waiting for my hospital appointment . Hope this answers your question.

I found out more about the disease because I googled something I wouldn't normally do, it did shed light on the disease but I also read some things that this disease can do. On good days I actually hope I haven't got this but on further investigation my mother's side of the family all Celtic have had various problems 're stomach pain my poor grandmother cried in pain as did her sister whilst two of her brother's survived WW2 but died from ulcers put down to stress of fighting. 

Wishing you well with your recovery. 

Many thanks

 

[trents]

What is a "boots pharmacist"?

[cristiana]

8 hours ago, trents said:

What is a "boots pharmacist"?

Hi @trents

Just seen this - Boot's is a chain of pharmacies in the UK, originally founded in the 19th Century by a chap with the surname, Boot.  It's a household name here in the UK and if you say you are going to Boot's everyone knows you are off to the pharmacist!

Cristiana

Edited April 19, 2024 by cristiana

[trents]

Oh, okay. The lower case "b" in boots in your first post didn't lead me in the direction of a proper name. I thought maybe it was a specialty apothecary for people with pedal diseases or something.

Edited April 20, 2024 by trents