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Waiting For Results

boho*mama

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boho*mama Apprentice
boho*mama
Posted

Hi, I'm new. I'm scared. I'm overwhelmed.

My son was just tested for Celiac yesterday, we'll get the results next week. He's got a lot of symptoms, he's 21 months and as developed (physically, emotionally and developmentally) as a 14 month old. His failure to thrive got me investigating and I wanted to talk to the dr about gluten intolerance but when the Dr saw the dry rash on his cheaks he suggested it first. If it comes back positive will we all need to be tested? My other son has eczema but no other symptoms....sorry train thought...

We are planning to go gluten free but that task seems impossible. I know it's not, I just have to learn a whole new way to cook, shop and order food at restaurants. We feel it will be best if our house is gluten-free even if the baby is the only one who needs it that way he has one place in the world that's safe and comfortable. Is tath okay? Will my other kids feel put upon by thier brother's new diet? Is gluten nutritionally important to non-celiacs?

I'm having a hard time taking it one step at a time. Every question leeds to more. Every fear opens the door to another.

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laurelfla Enthusiast
laurelfla
Posted

first of all, you have come to the right place! and props to you for getting to the bottom of what is going on with your son. i'd suggest reading all you can here and on other celiac websites to gather all the info you can while you wait for the results to come back.

no, gluten is not necessary for non-Celiacs, and Dr. Peter Green (Celiac expert) says that no one actually digests wheat that well, that humans were never meant to eat such large quantities of grains as we do. so they won't miss out on anything healthwise. if they complain or seem to not be happy with what you decide, you can always remind them they can have gluten outside the house. (i'd kill for that option!) ;)

it is completely normal to be totally overwhelmed by the lifestyle change that you might be about to take on. there are so many questions and so many things to remember. i'll be thinking about you all and praying for speedy results!

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Disney323 Apprentice
Disney323
Posted

Hi Bohomama,

I'm in a similar situation. My son is 17 months and was diagnosed via bloodtest that he could possibly have Celiac Disease. My husband and I were both quite upset and didn't feel it could be as he's shown no symptoms that I thought would relate to Celiac. He is Failure to Thrive (19 lbs. at 17 months) and doesn't eat much at all. He had a biopsy (which will be the next step for you if the test comes back positive). We are awaiting results but the Dr. feels it's Celiac because he has bumps in his intestine. Meanwhile, I've startd him on Gluten Free (he couldn't be Gluten Free until the biopsy was performed) and he hasnt' shown any changes yet. It's only been a week though. I wish you the best of luck. This is a great website to come to. I am still learning and am very overwhelmed too. Take Care.

~Andrea

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    • trents
      Waiting for urgent referral.

      By trents · Posted

      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
      Waiting for urgent referral.

      By Fluka66 · Posted

      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.
    • Moodiefoodie
      Joint swelling when ill even on gluten-free diet

      By Moodiefoodie · Posted

      Wow! Fascinating info. Thanks so much! I really appreciate the guidance. @Spacepanther Over the years I have had rheumatologists do full lab work ups on me. They told me they had screened me for arthritis, lupus, and Lyme disease (all negative). In addition to joint pain and stiffness I had swelling in both knees that later moved to my elbow as well.  I also experience stiffness and pain in my neck and shoulders when it flares. I vomited fairly often growing up, but there wasn’t a real pattern to it and I didn’t know it wasn’t normal (thought people caught stomach viruses often).  I don’t usually have stomach symptoms immediately after eating gluten that I notice.  The only other joint condition I know of is fibromyalgia. Good luck! Hope you can get it figured out. I only assumed my joint symptoms were due to the celiac’s because it is under control for the most part on a gluten-free diet.  The rheumatologist also mentioned that some inflammatory/autoimmune diseases can be slow-moving and not detectable until they progress.
    • knitty kitty
      Joint swelling when ill even on gluten-free diet

      By knitty kitty · Posted

      @Spacepanther, I found these articles about the connection between Celiac and joint pain. Musculoskeletal Complications of Celiac Disease: A Case-Based Review https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10201087/ And   Intestinal microbiome composition and its relation to joint pain and inflammation https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6814863/ And The gut microbiome-joint connection: implications in osteoarthritis https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6903327/ Sounds like it's time to change the diet to change the microbiome.
    • knitty kitty
      Still testing positive after being gluten free for one year ?!!

      By knitty kitty · Posted

      @Shireen32,  Take some deep breaths.  Your labs are fine!  Your tTg IgA is so low!  Well done!  Your endomysial IgA is fine.  There's not a level on the endomysial test.  It's just "yes or no" for if you have celiac disease.   No, it's too early to call it refractory. What are you eating?  Please tell us more than meat and veg. Do you consume dairy? Do you consume processed gluten free foods?   Are you taking any prescription medications, herbal supplements, vitamins and minerals?  
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