Continuing nausea bloating, persistent TTG, strictly gluten free

[CeliacMom57]

Hi everyone,

First some history: my daughter had some mild chronic constipation since she started solid food (she is now almost 19). The pediatrician always suggested more fluids, more exercise.  I did that and added wheat germ to her oatmeal.  Still no resolution, but the constipation was never enough that we needed a separate visit to the doctor for it.  

Fast forward to 2 years ago, when she developed serious anxiety issues and then dropped almost 20 pounds in two months.  After numerous trips to the doctor we finally got the diagnosis of Celiac disease. Within 2 weeks of being gluten free her anxiety issues were resolved!  

She had started birth control pills about a year before; we decided to stop them thinking it may be been the 'trigger'. Hindsight tells me she may have had Celiac along.

Her TTG was never extremely high, but it has still not come down into a normal range. She has constant nausea and bloating which is better in the morning but gets worse as the day progresses (as she eats more). She has only gained back 10 of the 20 pounds she lost, but is finally in a normal BMI range. Here is the kicker; her period has not returned; she has not had a period for about 2 years. At first we thought it was due to her being underweight. But she is now in normal BMI (the low end) and it still has not returned.

Her GI doc did another endoscopy; villi are totally healed, proving she is compliant. Our whole house is not only gluten-free but grain free as well. We have tried to remove most processed foods. She has tried a low FODMAP diet and the AIP protocol diet; none of which helped the nausea and bloating issues. Nausea is so bad she cannot lay down at night to sleep; she sleeps propped up. She has never vomited, does not complain of any pain anywhere.

GI doc did CT scan which did not show anything. Capsule endoscopy did reveal 'diffuse dilated lacteals' but her GI doc is not concerned with this. Googling it makes me think we should pursue it; it could be a malabsorption of fat issue. Not properly absorbing fat could account for no period.  

Is there anyone out there that may have idea? If the villi are totally healed, can you still be having celiac symptoms? 

 

Thank you

[trents]

7 hours ago, CeliacMom57 said:

Hi everyone,

First some history: my daughter had some mild chronic constipation since she started solid food (she is now almost 19). The pediatrician always suggested more fluids, more exercise.  I did that and added wheat germ to her oatmeal.  Still no resolution, but the constipation was never enough that we needed a separate visit to the doctor for it.  

Fast forward to 2 years ago, when she developed serious anxiety issues and then dropped almost 20 pounds in two months.  After numerous trips to the doctor we finally got the diagnosis of Celiac disease. Within 2 weeks of being gluten free her anxiety issues were resolved!  

She had started birth control pills about a year before; we decided to stop them thinking it may be been the 'trigger'. Hindsight tells me she may have had Celiac along.

Her TTG was never extremely high, but it has still not come down into a normal range. She has constant nausea and bloating which is better in the morning but gets worse as the day progresses (as she eats more). She has only gained back 10 of the 20 pounds she lost, but is finally in a normal BMI range. Here is the kicker; her period has not returned; she has not had a period for about 2 years. At first we thought it was due to her being underweight. But she is now in normal BMI (the low end) and it still has not returned.

Her GI doc did another endoscopy; villi are totally healed, proving she is compliant. Our whole house is not only gluten-free but grain free as well. We have tried to remove most processed foods. She has tried a low FODMAP diet and the AIP protocol diet; none of which helped the nausea and bloating issues. Nausea is so bad she cannot lay down at night to sleep; she sleeps propped up. She has never vomited, does not complain of any pain anywhere.

GI doc did CT scan which did not show anything. Capsule endoscopy did reveal 'diffuse dilated lacteals' but her GI doc is not concerned with this. Googling it makes me think we should pursue it; it could be a malabsorption of fat issue. Not properly absorbing fat could account for no period.  

Is there anyone out there that may have idea? If the villi are totally healed, can you still be having celiac symptoms? 

 

Thank you

Is she still consuming dairy?

[CeliacMom57]

She has also removed dairy from her diet.

[Scott Adams]

I would go through this article and see if some of the things mentioned might help. Above all, be sure she's 100% gluten-free. An endoscopy really can't tell you that for sure, and the fact that she still has high antibody levels tells me she's probably getting hidden gluten in her diet. Does she eat restaurant foods? They are a primary source of contamination.

 

[trents]

https://onlinelibrary.wiley.com/doi/full/10.1111/j.1440-1746.2006.04556.x#:~:text=At duodenal endoscopy%2C dilated lacteals,inflammation and blunting of villi.

I agree with Scott. My guess is she is getting glutened through cross contamination. All meds and supplements should be checked. At her stage of life it is so very difficult to totally avoid gluten because of the social pressures to eat with the crowd.

[CeliacMom57]

Thank you all for your responses. Cross contamination was our initial thought, so the whole house went gluten free. I purchased new toaster, new cookware and cooking utensils, new baking sheets/racks, new food storage containers, and scrubbed dishes and utensils with steel wool early on. The entire house is gluten free and has been for over a year.

When the nausea/bloating still did not improve, we moved on to checking toothpaste/makeup/shampoo/soap. We check for gluten-free OTC medication and make sure the pharmacist is aware of the need for gluten-free. I don't totally trust the medication (OTC or Rx).

She has taken on almost all of the food prep and shopping as we dove deeper into more restrictive diets (we all ate low FODMAP and AIP dinners). She has become a really good cook and her meals are better than anything I can get out!

She refuses to eat out; mostly out of fear, but now because her meals are better! She has very supportive friends.  She has experienced getting glutened when her boyfriend kissed her after eating food with gluten and she states that feeling is different from her usual nausea and bloating.

She avoids any food with labels 'natural flavoring' because of the unknown source. She does not eat mushrooms unless she is sure they were grown on wood and not straw.

We are 100% certain she is not getting glutened. 

To me, the lack of return of her period is a big red flag--her body is saying something is wrong. I'm frustrated because the GI doc does not seem the lack of period is his area and the gyn doesn't think the celic is her area.

She has had SIBO test, H.Pylori, all her labs are normal for the usual chem panel and vitamin tests, thyroid test is normal, normal bone density, normal intestinal motility.

[trents]

It does seem like you guys have all the bases covered when it comes to cross contamination. And since she is grain free that rules out Oat protein intolerance. What about the possibility of other food intolerances such as egg? Over the years of being a celiac I have developed a partial intolerance to chicken eggs. I can usually consume 1 poached egg without issue but more than that I get a belly ache and feel nauseous. And I don't know that non-gluten food intolerances would have any effect on TTG.

Is she still able to maintain weight despite the nightly nausea? Is the nausea accompanied by emesis? Are you sure she is not masking an eating disorder?

[CeliacMom57]

Thank you for taking the time to respond!

The AIP diet  did reveal an issue with eggs, so she is now egg free. This is a diet that strips out most things for the first few weeks and then you gradually re-introduce foods. No other issues have showed themselves.  And the year before the celiac diagnosis she developed a stone fruit allergy--itchiness around her mouth after eating peaches/nectarines/plums.  She can now eat them if they have been cooked.

No emesis; weight has been holding despite nausea. She is taking Buspar (prescription) for the nausea--it helps a bit.

The fact that the nausea is minimal in the morning after fasting, gets increasing worse with bloating as she eats really points to something GI related. The fact she still has no period makes me inclined to have her GI pursue the 'diffuse dilated lacteals' thinking there may be a fat malabsorption issue.

[fllstuart77]

biopsy can miss areas of damage

[fllstuart77]

did her antibody levels drop at all in those 2 years ?    what are they ?

You mentioned she already was contaminated with gluten by her boyfriend.   How often is she kissing him?    If it's daily..  then that could be enough to keep antibody levels up