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Please Provide Some Insight.....

momofmoe

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momofmoe Newbie
momofmoe
Posted

Our nightmare began in December. Our eldest daughter had a sore throat, within 2 weeks she was out of school, within 4 she had mononucleosis. All the doctors said she would be up and moving around in a few weeks. She ended up hospitalized a week after diagnosis with severe dehydration and a stomach that sounded like a war zone. "keep her on a bland diet" we were told. And, we did. She was so weak she couldn't walk unassisted. She was so exhausted she does not remember the entire month of February. She went to homebound for school and has been home since mid January.

One morning she woke up to a bloody nose. Those have continued on a daily basis. Her stomach cramps and her pain on a 1-10 scale is always an 8. "I will feel better if my stomach would just calm down" she says. I believe her. I lie next to her and her stomach is unlike anything I have heard. The doctors are at a loss. They all agreed that since the EBV was gone and the mono is not testing positive anymore that she should feel better by now. She developed this itchy rash on her legs, and she has terrible dandruff- something she's never had. The rash, we thought was shingles, only that came back negative. Doctors thought perhaps she had a "heat" rash from sweating. She will go from being hot to cold and will run a fever for an hour or two and then drop down to normal again.

Two weeks ago, I took her off all breads, cereals and starches. Within 3 days she felt better. Her pain went from an 8 to a 5. We had an exsisting appointment with a GI doctor for her as we've had ultra sound after ultra sound done only to be told, "Everything looks normal". I took her off gluten, told the doctor who said it was fine to do so, but to put her back on after a week or so. We did that yesterday. our appointment is in a few days. She is back to an 8 in pain and is miserable.

I need some insight on all of this and if anyone has experienced mononucleosis triggering celiac or gluten intolerance. Are bloody noses a sign? I don't know what ssymptoms are for what anymore, we've been battling this for so long everything is a blur. Any input would be graciously appreciated.

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gary'sgirl Explorer
gary'sgirl
Posted

Our nightmare began in December. Our eldest daughter had a sore throat, within 2 weeks she was out of school, within 4 she had mononucleosis. All the doctors said she would be up and moving around in a few weeks. She ended up hospitalized a week after diagnosis with severe dehydration and a stomach that sounded like a war zone. "keep her on a bland diet" we were told. And, we did. She was so weak she couldn't walk unassisted. She was so exhausted she does not remember the entire month of February. She went to homebound for school and has been home since mid January.

One morning she woke up to a bloody nose. Those have continued on a daily basis. Her stomach cramps and her pain on a 1-10 scale is always an 8. "I will feel better if my stomach would just calm down" she says. I believe her. I lie next to her and her stomach is unlike anything I have heard. The doctors are at a loss. They all agreed that since the EBV was gone and the mono is not testing positive anymore that she should feel better by now. She developed this itchy rash on her legs, and she has terrible dandruff- something she's never had. The rash, we thought was shingles, only that came back negative. Doctors thought perhaps she had a "heat" rash from sweating. She will go from being hot to cold and will run a fever for an hour or two and then drop down to normal again.

Two weeks ago, I took her off all breads, cereals and starches. Within 3 days she felt better. Her pain went from an 8 to a 5. We had an exsisting appointment with a GI doctor for her as we've had ultra sound after ultra sound done only to be told, "Everything looks normal". I took her off gluten, told the doctor who said it was fine to do so, but to put her back on after a week or so. We did that yesterday. our appointment is in a few days. She is back to an 8 in pain and is miserable.

I need some insight on all of this and if anyone has experienced mononucleosis triggering celiac or gluten intolerance. Are bloody noses a sign? I don't know what ssymptoms are for what anymore, we've been battling this for so long everything is a blur. Any input would be graciously appreciated.

I think that Celliac Disease is a definet possibility. I would call the doc today and ask for them to call in a blood work up for today so you can take her back off of gluten. She does need to be on gluten to have an accurate test. The other thing I thought of was the possability of Lyme Disease - which can also respond to a gluten free diet. Type Lyme Disease into the search on this site and it will bring up a thread that someone started. It has a really good list of symptoms posted.(I was just researching lyme disease resently and a few of her symptoms reminded me of it)

I really hope you get to the bottom of her problems. I'm so sorry for your family to be going through this. It's heart breaking!

gary'sgirl Explorer
gary'sgirl
Posted

Oh, also, they do say that illness can trigger Celiac Disease. It sound like you're on the right track.

momofmoe Newbie
momofmoe
Posted
  • Author

Not Lyme Disease. We tested on the onset and again after the monospot kept coming back negative. Monospot came back positive, and then all of this other stuff began. I am hoping we get some answers. Thank you for your reply.

psawyer Proficient
psawyer
Posted

It was not so for me personally, but mono is commonly reported as a trigger for celiac disease.

tarnalberry Community Regular
tarnalberry
Posted

Illness can certainly trigger it. It could also have allowed a non-symptomatic version to start displaying symptoms. Even if it's not celiac disease, you, and she, knows she feels better without cereals/bread/starches. (Have you taken out *all* gluten, not just the obvious sources?)

momofmoe Newbie
momofmoe
Posted
  • Author

Tarnalberry-

I took it ALL out and all she knew was that she had to go on a special diet for a few weeks. She got cereal-it was just Chex, and gluten free, and I kept her with gluten free pasta which she didn't taste a difference and I kept her on yogurt and fresh fruits and vegetables. It wasn't until we gave her a slice of bread that things reared their ugly head again.

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GFinDC Veteran
GFinDC
Posted

Have they tested her for a wheat allergy? Celiacs can have wheat or other food allergies in addition to the celiac gluten intolerance.

If she has celiac she needs to avoid all wheat, rye, barley, and oats. Oats may not be a problem for her but 10 to 15% of celiacs have a reaction to oats.

Here is a list of the top 8 food allergens for the USA from Mayo clinic. Soy is a big one for some of us, (like me).

Open Original Shared Link

* Milk

* Eggs

* Peanuts

* Tree nuts (such as almonds, cashews, walnuts)

* Fish (such as bass, cod, flounder)

* Shellfish (such as crab, lobster, shrimp)

* Soy

* Wheat

The best way to start the gluten-free diet is to not eat all the gluten-free goodies they sell. Instead eat only home made foods from whole ingredients. Nothing processed. Also cut out all milk and dairy and soy for a few months. Watch out for spice blends that may contain gluten, single ingredient spices are safer. Also some teas may have barley in them.

I had a cold or something that caused joint aches. After that cold I couldn't eat dairy. Eventually I found out I had celaic.

jerseyangel Proficient
jerseyangel
Posted

Just from reading here for several years I have seen mono be a trigger quite a few times. I think you are on the right track suspecting Celiac. Best of luck :)

cbur53 Newbie
cbur53
Posted

First, I'm so sorry your family is going through this, and especially your daughter. This reminds me so much of what I went through about 16 years ago. Everything, the terrible weakness, stomach noises, etc. etc. I was in hospital for a week, they gave me lots of that stuff that kills stomach acid, accused me of being bulimic and wanted to put me on sedatives and then sent me home. I wasn't sure I would make it. My husband went to the HF store and came home with a bottle of HCl, Betaine Hydrochloride. That was the beginning of my being able to eat again, then I found enzymes and that helped even more. Then herbs for Candida, and the diet. Also I knew I had malabsorbtion, so lots of supplements. So I was able to sort of function for many years, but a couple months ago I found that I was highly allergic to gluten, eggs, liquid milk (not yogurt and some cheeses), garlic, tree nuts, and a few other foods. Not sure yet, but maybe it is Celiac. So the pieces of the puzzle are fitting together one by one.

Maybe when I get this part straightened out I can come down on the HCL and enzymes and supplements, I don't know. I've been anemic all my life, and now my iron levels have shot right up.

It was a horrible, horrible time, and each step up was such a blessing. Hope you find answers real soon, and I hope this helps maybe even just a bit.

I'm thinking my triggers have been a whole bunch of mercury fillings in a short time, and antibiotics.

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