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Wait For Diagnosis Or Not?

crystal181

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crystal181 Newbie
crystal181
Posted

Hi all. I have been having problems for years that seem to be getting worse. I have been to so many different Drs that it's not even funny. Most recently I've been seeing Infectious Disease for my unexplained high WBC and host of other symptoms. Also I recently had a colonoscopy and Egd done. One sample was taken from my small intestine and was shown to have flattened villi. My Dr said this may be from wheat intolerance and to reduce my wheat intake for 4-6 weeks. Reduce not remove. Infectious disease thinks the probability of me having celiac disease is high. I had a tTG IgA but was neg. I have very low vitamin levels and tons of symptoms that point to celiac. They want me to see their GI dr to make the diagnosis. However he can't see me until January! My regular Dr is looking for someone to see me sooner but it still may be a month or more before I can get in. I really want to go gluten free now and not be miserable anymore. But I also know that my tests will show up negative if I go gluten-free. How important is it to have an official diagnosis?

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ravenwoodglass Mentor
ravenwoodglass
Posted

Any doctor can order a complete celiac panel for you. Make sure it includes the total IGA as if that is low it causes a false negative in the IGA celiac testing. You have already had the scope and were very lucky that it showed up positive as they only took one biopsy.

So ask your regular doctor to do the blood test for you. Do not go gluten free until the blood is drawn. 

momtoagfkid Newbie
momtoagfkid
Posted

I'm pretty new to dealing with Celiac, but I come down very strongly on the side of seeking a definitive diagnosis.

I believe it's in your best interest and the best interest of the wider celiac community.

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cyclinglady Grand Master
cyclinglady
Posted

While some people are never able to get a diagnosis (my hubby) and manage well on a gluten-free diet (14 years), a firm diganosis can mean more support from family, friends and medical. Celiac disease runs strongly in families. There is no resistance to testing when my kid needs it every few years even though she is symptom free (same for my siblings).

Keep eating gluten and ask your GP for the following complete panel:

-tTG IgA and tTG IgG

-DGP IgA and DGP IgG

-EMA IgA

-total serum IgA and IgG (control test)

-AGA IGA and AGA IgG - older and less reliable tests largely replace by the DGP tests

-endoscopic biopsy - make sure at least 6 samples are taken

(Source: NVSMOM -- )

I also want to let you know that my ttg was NEGATIVE and I had only a positive on the DPG IGA and yet my biopsies revealed moderate to severe intestinal damage. I was fortunate that my doctor ordered the entire panel!

Welcome to the forum and let us know how it goes!

crystal181 Newbie
crystal181
Posted
  • Author

Thanks so much for the replies. I'm going to be patient and wait for the diagnosis but it's hard knowing that this might help solve all of my problems. I'm so miserable at this point and just want to feel better now. Tomorrow I'm going to see my regular Dr and have him order the blood tests.

crystal181 Newbie
crystal181
Posted
  • Author

I gave them the entire list and had the dr add HLA DQ2 DQ8 but they only took 6 vials of blood. They must have left something out. So now I wait....

kareng Grand Master
kareng
Posted

I gave them the entire list and had the dr add HLA DQ2 DQ8 but they only took 6 vials of blood. They must have left something out. So now I wait....

 

Often they do more than one test on a vial of blood.

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    • deanna1ynne
      Inconclusive results

      By deanna1ynne · Posted

      The first negative biopsy in 2021 just said "no pathological change" for all the samples, and the second one in 2022 said "Duodenal mucosa with mild reactive change (focal foveolar metaplasia) and preserved villous architecture." So I think Marsh score 0 in both cases, though it's not actually written in the pathology reports. I'm really hoping to get a clear positive result this time, just for her sake.  
    • Wends
      Blood results

      By Wends · Posted

      Hopefully the biopsy gives a conclusive and correct diagnosis for your daughter. Im in the UK and have been in the situation a few years ago of trying to rule celiac in or out after inconclusive results. Many symptoms pointing to it including the classic symptoms and weight loss and folate and iron deficiency. You have to play a waiting game. I also had the label of IBS and likely food allergy. Genetic test showed low risk for celiac but not no risk. It sounds like the Gastroenterologist is on it and hopefully will diagnose what it is correctly. Food hypersensitivity (allergy) can also cause similar symptoms and inflammation as well as mimicking IBS. Milk / dairy and wheat (cereal grains) being the biggest culprits. The “oesophagitis” and “gastritis” you mentioned can be caused by another gastrointestinal disorder called “eosinophilic gastrointestinal disorders”. These are named depending on which part of the gastrointestinal tract is affected. For example eosinophilic oesophagitis, eosinophilic gastritis, eosinophilic gastroenteritis, and more rare eosinophilic colitis. They are antigen (allergen) driven. When the blood test measuring anti-ttg antibodies is positive in absence of a positive ema test - which is more specific to celiac, this can also suggest food hypersensitivity (allergy). Usually delayed type allergy similar to celiac but not autoimmune if that makes sense. In this case the ttg antibodies are transient. Which happens. I’ve first hand experience. For info, evidence of villous atrophy too can be caused by food hypersensitivity. Not just by celiac disease. In Egid disorders the six food elimination diet, under a dietitian and gastroenterologist care, is the dietary protocol to figure out the culprit or culprits. Sometimes only two food elimination diet is used at first. The number one culprit is milk protein / dairy. Followed by wheat, eggs, soy, fish and seafood, and nuts. Most are only reactive to one food group or two. Most are only reactive to milk. Hope this is a helpful reply.
    • Bennyboy1998
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    • Wends
      Inconclusive results

      By Wends · Posted

      Wow, the system is crazy isn’t it? Maybe switch Doctors if you can. It’s surprising from what you’ve written it seems obvious it’s celiac disease. The “potential” diagnosis means celiac is developing and it basically just hasn’t done enough gut damage to be captured on the biopsy yet, and meet that “criteria” to satisfy the current system! Given the overwhelming evidence already - family history, positive ttg and ema. And your own experience and intuition which counts far more. And the labs being reproduced after gluten elimination and reintroduction- elimination and reintroduction diet is the gold standard too. Shame on the Doc and the system. What was the Marsh score? I’m guessing not 0 if it’s potential celiac. Meaning the autoimmune process has been triggered and started. Your daughter is obviously very healthy and her immune system is putting up a good fight. It can take years for the gut damage to build to a point where there’s overt symptoms and then a conclusive diagnosis, hence why many celiacs receive diagnosis later in life. You can prevent it. See the positive and the gift in that. Hopefully the gluten challenge confirms it, but if it doesn’t maybe get a second opinion?
    • cristiana
      How Come Gluten Didnt Bother Me In Italy

      By cristiana · Posted

      @Gigi2025  Thank you for your interesting post.  Some of what you say chimes with something my gastroenterologist tells me - that he has clients who travel to France and find the same as you  - they will eat normal wheat baguette there without issue, for example.  His theory was he thought it might be to do with the locally sourced wheat being different to our own in the UK? But I have to say my own experience has been quite different. I have been to France twice since my diagnosis, and have been quite ill due to what was then (pre-2019)  poor labelling and cross-contamination issues.  My TTG test following my last visit was elevated - 'proof of the pudding', as we say in the UK!  It was not just a case of eating something like, say, shellfish, that disagreed with me - gluten was clearly an issue. I've also been to Italy to visit family a couple of times since my diagnosis.  I did not want to take any chances so kept to my gluten free diet, but whilst there what I did notice is that coeliacs are very well catered for in Italy, and many brands with the same ingredients in the UK are clearly marked on the front of their packaging that they are 'senza glutine'.  In the UK, you would have to find that information in the small print - or it puts people off buying it, so I am told!  So it seems to me the Italians are very coeliac aware - in fact, all children are, I believe, screened for coeliac disease at the age of 6.  That must mean, I guess, that many Italian coeliacs are actively avoiding gluten because, presumably, if they don't, they will fall ill?        
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