Test Results - Was Celiac Really Ruled Out?

[Frankys Mum]

Hi, I'm new here, and like many others I have not been diagnosed with celiac but have had quite a long journey with some ups and downs and still have questions over what is going on with me. I would SO appreciate some fresh eyes having a look through my results and story and offer any knowledgeable insights... (Sorry it's long, I tried to make it as short as possible with all the information!)

Growing up:

Eczema as an infant.

As a child I often remember having bad nausea in the evenings.

Wheezing after dairy products and mild eczema as an adolescent.

2000 (age 19): Suddenly started suffering persistent chronic nausea with frequent 'attacks' where it got much worse, leaving me retching and shaking for hours. Lost a lot of weight due to not feeling like eating. No cause determined.

2001:

General blood screen normal bar very low B12 and iron levels identified.

Gliadin IgA Abs: 2 (0 - 20) NEGATIVE

Endomysial Abs: NEGATIVE

Upper endoscopy performed. Intestinal mucosa: The overall architecture appears unremarkable with predominantly tall, slender villi in addition to shorter blunter villi. The epithelium appears intact and the lamina propria contains a modest infiltrate of mononuclear cells and eosinophils.

Treated for iron and B12 deficiency, given antidepressants and sent for counselling due to my apparently 'psychosomatic' symptoms.

2003: Still battling chronic nausea. Saw an alternative health professional who advised to go wheat free.

2004: Wheat free and largely gluten free. Symptoms somewhat improved but not completely.

General blood screen normal apart from iron and B12 levels persistently low.

Endoscopy, colonoscopy and gluten blood screening performed. The fact that I was eating very little gluten was not discussed prior to testing or these procedures taking place. 

TTG IgA NEGATIVE

Endomysial Antibodies IgA NEGATIVE

Total IgA *0.60 g/L (0.8 - 4.00)

Upper endoscopy report: Mucosa to distal duodenum looks normal. Of note was a moderate volume of bile-stained effluent in stomach though mucosa looks unperturbed. 

Duodenum biopsy: No abnormality recognised.

Colonoscopy results normal bar a hyperplastic polyp (non-malignant).

Gastro specialist said my issues were unexplained, or could be described as IBS. Mentioned I could try going gluten free to see if it made a difference.

Went completely gluten and dairy free (due to previous history). Felt much improved. No other action taken.

Present:

Generally okish. I maintain a strict gluten free diet but when I have accidentally ingested gluten I react within 15 minutes with diarrhoea, vomiting, uncontrollable shaking and severe nausea for 3 - 4 hours. Nausea persists for 2 - 3 days. Ingesting dairy gives me diarrhoea. I often also have unexplained bouts of mild/moderate nausea I can't trace to anything specifically.

Due to the severity of my reaction now I just really question whether celiac was ever ruled out properly for me, particularly noting that my second endoscopy and tests were performed when I was largely gluten free, and that when a total IgA level test was finally performed my level was on the lower side of the normal range. I'm not sure if these, or any other results are significant though and would love other opinions. I just have these ongoing issues I wish I could get an answer for!

[treesahope]

I was told to eat  a  lot of Gluten filled foods before my tests!   If you were nearly gluten free before testing, results can be inconclusive.

[kareng]

"A gluten challenge is the period of time when gluten is added back into a person’s diet to assist in the diagnosis of celiac disease. Antibodies take time to build into the blood stream before they can be detected through blood analysis. For a gluten challenge we recommend eating 1/2 slice of bread or a cracker each day for the duration of the challenge.

Prior to blood testing we recommend 12 weeks of eating gluten.

Prior to an endoscopic biopsy we recommend 2 weeks of eating gluten."

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[1desperateladysaved]

Greetings and welcome:

 

The first endoscopy listed, was that intestinal?  Okay, because I read villi, if intestinal villi are blunt and slender; isn't that "scalloped."  If one has scalloped villi, doesn't the doctor often say even before the biopsy is complete that it is celiac?  If it wasn't intestinal please clarify as necessary to hold to the subject of the thread.  You're saying that the second endoscopy you were gluten free made me think it may have been an earlier endoscopy.  Perhaps you should seek a second opinion on the endoscopy if it was one.

 

I am glad you are discovering a healthier life,

 

Dee                                                                                  *****

[Frankys Mum]

Thank you for your thoughts so far.

Dee, yes, I had two endoscopies:

The first was in 2001 when I was eating gluten, although at the time I wasn't eating much at all because I felt so sick (would often go five days at a time without eating etc). The report on intestinal biopsies said: "The overall architecture appears unremarkable with predominantly tall, slender villi in addition to shorter blunter villi. The epithelium appears intact and the lamina propria contains a modest infiltrate of mononuclear cells and eosinophils". I was told I did not have celiac, and my issues were likely some kind of psychosomatic symptoms because everything physical had been ruled out.

The second was in 2004 (at the same time as a colonoscopy). I was largely gluten free at this point but the doctors never really took this into account or discussed this with me. I was told no intestinal abnormalities were present (bar the 'bile stained effluent' in my stomach which they said was weird but shouldn't be an issue).

I know that a diagnosis of celiac doesn't change anything in that I'm already better off gluten free, but I think it would give me peace and validation to know it had been ruled out or was still a possibility. My son also appears to have some food sensitivities so it would be good to know one way or another. Aside from the gene test I'm not sure what other options there are for me anyway as due to the severity of my reactions there's no way I could do a gluten challenge... It's just frustrating that I feel that maybe not everything that should have been done was done when I first got sick!

[BlessedMommy]

I understand your frustration.

 

I'm gluten free without a DX and my path is fairly similar to yours. I ended up deciding to go strictly gluten free after a failed gluten challenge (with hospitalization) over 4 years ago. I know that I will be gluten-free for life and it's frustrating to have to do so without a firm DX, but it is what it is, and I know that gluten is poison to me. I won't try another gluten challenge, because I may not survive the next one! What I tell people is that given my family history, my personal medical history, and the fact that celiac was never ruled out, I must treat my diet as a celiac diet, although celiac wasn't confirmed.

 

It doesn't sound like you have very many options, other than taking the gene test unfortunately. I look forward to the day when celiac can be determined without gluten exposure.

[1desperateladysaved]

Would anyone agree that one might take the write up from that first endoscopy and seek out a second opinion? 

 

Dee