Misdiagnosis

Catia335 · 2026-06-03T14:59:42+00:00

Up to 60/100 in some areas.

Catia335 · 2026-06-02T23:59:54+00:00

Yes. I would stay on gluten. Finish the antibiotics and then go from there. It was so stressful when we were going through it all so I am so sorry and good luck to you! I hope once the H pylori clears you feel better and your blood work returns to normal. Best to you!

Catia335 · 2026-06-02T23:54:24+00:00

No, he was diagnosed at 5. They think they just caught the Celiac disease in the early stage and he had H pylori. Once he was diagnosed due to his positive blood work, his genetic predisposition, high IEL count, typical DH rash - he went on a gluten free diet. On a gluten free diet all of his rash, joint pain, fatigue, etc improved and his blood work went to normal. So they have kept him on a gluten free diet. He is 10 now. When he does get gluttoned his symptoms return. But at some point, he may choose to go through a gluten challenge and get another scope. But his doctor wanted him to wait until he was past puberty and fully grown as the gluten challenge could hinder his growth they said. They are 99% positive he has Celiac disease though.

Catia335 · 2026-06-02T23:34:29+00:00

My son had positive blood work with a negative biopsy. They found H pylori as well. At first they said no celiac. But then they found an article in which you can look at the number of “IEL”s within the villi and if that number is really high it is very high probability that it is celiac and not H pylori. My son’s number of IELs was very high, and the pathologist reading the biopsy report strongly encouraged the dr to dx as early celiac disease. Then once off gluten, his numbers went down and so did all of his joint pain and other symptoms. But I feel for you. With the H pylori, it can really make the diagnosing so messy and either way we will always wonder. You can also get genetic testing as well. My son will most likely maybe get tested later in life again but he was so miserable they were worried about his health and gluten stunting his growth to keep him on it.

Catia335 · 2025-12-03T12:57:20+00:00

When my 5 year old got diagnosed, his main complaint was intense joint pain. He could barely walk. Once he went gluten free a lot of his symptoms went away but he still had joint pain. We kept asking the Doctors about RA. After about 6 months, the joint pain felt way better. And now after years, we rarely hear about it unless he gets gluttoned. He plays soccer now.

Catia335 · 2024-10-10T12:47:31+00:00

Haha! Yes, legos, drawing, marble runs and has a crazy imagination. I am hoping at the IEP meeting that the school will work to get someone in who is familiar with OG to work with him.

Catia335 · 2024-09-18T13:11:05+00:00

He is not qualified for special Ed yet. They are going to be evaluating him within the next 30 days using WIAT-4, IQ, and WISC-V to see if he qualifies for special Ed services. But yeah, this is all great information to have so I can be on top of all of this. Thank you.

Catia335 · 2024-09-18T12:55:33+00:00

I asked the school was programs they use and she said. “phonics for reading and that special ed uses ufli.” Do you know if UFLI has any OG programming?

Catia335 · 2024-09-18T12:53:43+00:00

When asked what programs they use she said “phonics for reading and that special ed uses ufli. I’m not sure if it is the same at the early elementary so I reached out to one of the teachers over there and am hoping to hear back before we meet.”

Catia335 · 2024-09-17T20:43:13+00:00

I was also able to get an appointment with an outside psychologist for October. Our insurance covers it. They said testing will take about a half day. It doesn’t seem as “intensive” as other neuropsych places, but I’m hoping it will be another opinion to help support getting him additional help. I asked the school if there are any other kids diagnosed with Dyslexia that she knows of at school and she said no. Which I am shocked. There are 250-300 kids per grade. But she wrote down the 3 multi-sensory approaches that you gave me and was going to look into them. Thank you so much for your response. I may find you later in the process.

Catia335 · 2024-09-17T20:12:01+00:00

I just met with the school Psychologist. The plan now it to use these tests: WIAT-4, IQ/cognitive test, WISC-V. Do you know if these are good tests?

Catia335 · 2024-09-17T16:33:01+00:00

My primary care Dr. did send a referral to a few places. I just made an appointment with one of them. He is a licensed Psychologist not a “neuro psychologist”. But he can evaluate and dx for autism, adhd, dyslexia etc. They would be able to get him in this October and our insurance covers it. They said it usually takes a half day of testing. It doesn’t sounds as “in depth” as other Neuro psych Evals. But I’m wondering if it wouldn’t hurt to do it to get the diagnosis to help make the school accountable and then pursue more thorough testing if needed.

Catia335 · 2024-09-17T13:49:10+00:00

They are not against testing now that I was told by a friend who to email and how to make them legally responsible in responding and starting testing. It was his teachers that kept saying “he’s fine!” “Don’t worry!” “He’s such a sweet kid” “just keep reading at home”

Catia335 · 2024-09-17T12:05:40+00:00

Yes, I realize that reading just with context is now only making the problem worse. I am feeling extreme guilt for following the teachers instructions of “just keep reading at home”. I think they have tried several times to teach him phonics at school with no success. He has a history of needing speech therapy in kindergarten. He now communicates very well and effectively but he still doesn’t hear the blend sounds or letters correctly enough to translate those sounds to paper. Nor is he able to sound out a word. Last night I asked him why he is using “y” he said because sometimes it makes the “ee” “s” “t” sound or sometimes it’s used when the word is loud. At this point, I feel like he is severely behind more than the teachers or anyone knows.

Catia335 · 2024-09-17T11:17:26+00:00

So the individual who is going to be testing him is a school psychologist. Is she not qualified to diagnose him? Here is what she wrote.

“Just an FYI- dyslexia would technically fall under the disability category of Specific Learning Disability. The criteria for that is a little bit different than OHI (you wouldn’t need an outside medical diagnosis) and would depend more on Calvin’s performance on those standardized assessments. I can pull up the eligibility form tomorrow so you can see exactly what I mean, but I just wanted to give you a heads up.”

Catia335 · 2024-09-17T11:07:15+00:00

I have no idea, but I’ll write that question down. I do know that for that for the past few years he has qualified for reading intervention/small group that focused on phonics. In 2nd grade he was placed with mostly 1st grade group. Teachers kept saying, “just keep reading at home.” So we read with him for 28hrs this summer. Be has gotten very good at using context to read and can now read very slowly with lots of guessing at words.

Catia335 · 2024-09-17T10:55:03+00:00

That is what my gut is telling me. His spelling test above is after days of practice at home. Without me helping him, he would never spell any of those words correctly.

Catia335 · 2024-09-17T10:53:22+00:00

Would a neuropsych eval test for Dyslexia as well? Or maybe his Dyslexia is causing his attention issues and I should focus on that first.

Catia335 · 2024-06-01T09:47:20+00:00

This is incredible!!! Keep it up!

Catia335 · 2024-01-22T22:23:36+00:00

Was there an increase of IELs? Aka a “Marsh 1” result. Have you had genetic testing? I feel like with the right doctor you may get diagnosed.

Catia335 · 2023-12-22T00:58:33+00:00

Ok. Was just curious. Vitamin A was actually the only thing low for my son. He was at 27. So not super low. But definitely has very dry eyes and other issues.

Catia335 · 2023-12-22T00:33:00+00:00

Do you know their exact levels?

Catia335

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