Damage Further Down?

[Feeneyja]

My daughter just underwent her celiac testing. She was gluten free for a month with beautiful results. when I reintroduced the gluten as a challenge, she had a violent reaction and I realized I should test her for celiac disease. So we had a difficult 6 week gluten challenge for the blood work and endoscopy. Both came back negative. Which I am happy to hear. I'm just a bit concerned we missed something.

See, her symptoms make me think that her problems are further down the intestines and not in the duodenum. This is the only part that was scoped. She has symptoms of fat malabsorption and her blood work had very low vitamin D and high alk phos. Everyone tells me that EVERYONE is low in vitamin D this time of year. But her pediatrician was surprised at such a low level (GI just said take vitamin D). She is a light skinned, child who is outside all the time and who drinks and eats lots of vitamin D fortified foods. On the supplement her stools have become even lighter. I think she can't absorb it and is just passing it through.

She also tested positive for SIBO. On the flagyl, 4 days in, she had a terrible allergic reaction (neurotoxic) so she went off it and had to wait 3 weeks for insurance to approve the next antibiotic. In the mean time, on a gluten free diet, eventually all symptoms went away. It took about two weeks. First her stomach symptoms went away, then the headaches, finally her coloring and energy returned to normal. The GI told us to keep her on gluten while on the antibiotic thinking that this would take care of everything. After 4 days, we took her off of gluten for good. While on the flagyl she continued to have symptoms and they only went away once we removed gluten. At that point she was not on any antibiotic. In fact she went to completely better off of an antibiotic. We have put her on an antibiotic now that it's approved because I want to be sure that the SIBO is treated.

I have been told repeatedly by the GI that it probably is the sugars in the wheat and she should try a low FODMAP diet. I can tell you that only gluten-containing foods bother her. She can have as much of any high FODMAP food she wants. Just can't have gluten. And at Mass she can have the low gluten communion wafer (made from wheat starch) with no problems. It's not the starch.

So, we never scoped the part of her intestines that seems to be troubled. It's clearly not a sugar issue. And she is clearly sensitive to gluten. Very sensitive to it. And clearly the gluten caused some sort of damage since it took two weeks gluten free to get better.

Has anyone had their scope turn up damage lower in the small intestines and not the duodenum? Has anyone had a negative blood work and scope but WITH clear gluten sensitivity issues eventually turn up as celiac positive later in life?

I don't want to assume more is wrong that is the case, but I also don't want to be lax if we got the wrong diagnosis.

Thoughts?

[nvsmom]

The endoscopy isn't perfect.  A celiac can have up to a 1 in 5 chance of having a normal scope.  It happens more often than people expect.  False negatives are more likely to occur if a variety of intestinal areas most often affected are not checked, or if fewer than 6 biopsy samples are taken.  Sometimes celiacs will only show Marsh stage 1 damage, which shows some damage to the intestine but not enough for a diagnosis.  

 

If you have a copy of the biopsy results, and are willing to share it here, some of our members who have researched this procedure should be able to help you by making sure the results are what your doctor said.

 

I know the blood tests pretty well, so that's what I'll ask about.  

 

Did she have the full celiac disease panel done?  Some doctors and labs only run a couple of tests and call it the full panel.  It's best to get as many tests done as possible because those blood tests aren't perfect either.  The more common tests can miss up to 25% of celiacs and the the older tests can miss many more.

 

This is the full panel:

• tTG IgA and tTG IgG (tissue transglutaminase) - most common tests
• DGP IgA and DGP igG (deaminated gliadin peptides) - newer tests which are good at detecting celiac disease in early cases and children
• EMA IgA (endomysial antibodies) - similar to tTG IgA but tends to detect the disease when it is more advanced
• total serum IgA - control test
• AGA IgA and AGA IgG (anti-gliadin antibodies)  - older and less reliable tests

Did she have all those done?  Or at least the top four?

 

SIBO has symptoms very similar to celiac disease.  That could cause some of her problems.

 

Some doctors do not accept non-celiac gluten sensitivity (NCGS) as a diagnosis anymore after a study showing that many had sugar (FODMAP) issues.  The leading celiac disease researchers don't accept that though, and they still discuss NCGS.  You'll find many around here who know they have NCGS too.  It can be every bit as nasty as celiac disease, with all of the same symptoms except for the rash and intestinal damage.  

 

If you are satisfied her celiac disease testing is done, or won't subject her to more time on gluten, then I think you are wise to have her go gluten-free.  It sounds like she needs the diet.  

 

If it at all possible that she is a celiac, you will need to feed her like one and never allow her to eat food that could be contaminated of have trace gluten.  Sometimes, when people have NCGS, they are not as careful as a celiac needs to be.  If there is any chance at all that she is a celiac.  Keep her 100% gluten-free... that includes anything with wheat starch - it hasn't been proven safe.

 

...Well-designed, scientifically sound studies are needed to help determine the amount of toxic prolamins, if any, that may be safely consumed by individuals with celiac disease. Until this research is conducted, dietitians in the United States should continue to advise their patients against the use of wheat starch and other foods rendered gluten free.

 Open Original Shared Link

 

Best wishes.

[Feeneyja]

The only celiac labs done were ttg iga and total iga. She was not iga deficient and the ttg was normal.

The reason I'm hesitant to say she is definitely not celiac is that my husband's father has RA, peripheral neuropathy, gerd. Two of his sisters have had gall bladder removal. One sister is on thyroid meds. Another has chronic stomach issues. Grandma also had RA and neuropathy, other health issues that no one could diagnose. She died with everyone thinking she was a hypochondriac. This family history plus my daughter's clear sensitivity have me wondering if we missed a correct diagnosis.

I am treating it as if she has celiac because if I dont't she gets really sick and I don't want that for her. We homeschool so I can clearly see the difference when on gluten. And since we Homeschool, I have complete control over food. Unfortunately, since the celiac testing came back negative, the grandparents don't understand why I'm being so careful and it's causing a bit of a strain.

[nvsmom]

You are in the same boat as me.  I have celiac disease so I had my kids checked. Two out of three of them had some pretty obvious symptoms, but their test came back negative.  The doctor would only do the ttG IgA test, which I KNOW has a sensitivity as low as 75% - that means that there was still a 25% chance that they are celiacs.  I put them on the gluten-free diet and their symptoms cleared right up.  A coincidence according to the doctor.  

 

This report has more stats: Open Original Shared Link

 

I tell people they are celiacs - there is a good chance they are.  We homeschool too so packed lunches are not an issue for us either.  

 

Just tell the grandparents that you are protecting their grandchild.  She may have celiac and you don't want her developing RA or thyroiditis or diabetes down the line, which she is more likely to do if she lives as an untreated celiac.  You are taking precautions.... Think of seat belts - chances are that a seat belt will never be needed to save her save her life, but they wouldn't let her ride without buckling up, right?

 

I think it is just hard for them because they don't know how to handle it, or treat their baby with snacks.  Bring them some gluten-free foods to keep on hand for her, and hopefully they'll eventually embrace it when they see how well she's doing ... Probably the same as it went when you first told them that you would be homeschooling, I bet.  LOL

[Feeneyja]

Ha! I had to laugh. You are right. It will just take time with the grandparents to see how well she is doing. The biggest problem right now is CC. We are going to have to bring our own pans over there if they are going to cook for her. And that is something they just don't understand.

[cyclinglady]

NVSMOM Gave you excellent advice. I just wanted to chime to let you know my TTG test was normal and I was not IGA deficient. My doc caught my positive blood test on the DGP tests -- and only one was barely positive yet my endoscopy (biopsy) revealed moderate to severe damage.

[nvsmom]

Ha! I had to laugh. You are right. It will just take time with the grandparents to see how well she is doing. The biggest problem right now is CC. We are going to have to bring our own pans over there if they are going to cook for her. And that is something they just don't understand.

 

You probably don't need to bring your own pans unless they are teflon coated pans that have scratches that could be contaminated.  Most pans will scrub clean enough.  The things you have to watch out for (I think) is not using her toaster (or wrap the bread in aluminum foil), contaminated sugar (from a flour coated measuring cup), and other baking supplies (baking soda, brown sugar, etc), as well as contaminated butter, peanut butter, jam, and other condiments.  Plastic collanders and some scratched utensils may also be an issue..

[Feeneyja]

They are Teflon coated with lots of scratches and sticky oil residue. She got sick when I made scrambled eggs in one when I was trying to feed her safely there.

It's just hard for others to understand about cross contamination. I know I didn't understand it at first.

[nvsmom]

So true...