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Misdiagnosed celiac disease Complications
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9 posts in this topic

Many long-time posters on board know who I am. I don't come around as often as I used to. The last 4 years have been pretty bad for me and my husband (health wise).

Anyway, he is now still very, very thin and needs a 3rd hernia surgery. Surgeon won't do it unless he gains 10+ lbs. It's very difficult for him to gain weight. So we are stuck, not going forward and refusing to go backward. Even I am depressed now; refusing the things I used to love to do; constantly worrying about my husband and what wll end up happening.

So I haven't had much to say, maybe I'd share on board here and there - I guess for a while there I was a regular. So I'll just share this news, maybe ask for some suggestions to gain weight (foods that don't include soy, eggs, frying, spices, fruits/vegetables, and of course gluten, no tomato sauce - this should be a challenge as he really needs to gain and surgeon turned him down because he's too frail. He started with the Ensure, but it's not enough calories.

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Looks like he can do cheese and meat. Those could fatten me up. Poor guy can't eat much, can he? Potatoes and rice. Ice cream? Beans? When my cousin grew 10 inches in 4 months & gained no weight, his doc put him on ice cream and a beer right before bed. ( Lucky 14 year old). What about seeds? Pumpkin, sunflower, sesame? Hang in there!

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Hi Deb,

Sorry to hear the hubby is having issues. I'd leave out the dairy myself, jus because so many of us have problems with it.

Avocadoes are a good source of protein and healthy fat, so maybe homemade guacamole would help. Hellman's makes one kind of soy free mayo, called canola oil cholesterol free mayo. A couple avocadoes, some lemon juice and mayo, maybe a can of salmon or mackeral stirred in and you have a nice nutritious spread.

You don't have to eat guacamole on a sandwich either. It adds a lot of flavor to rice dishes. Just nuke a bowl of rice and stir in a couple tablespoons of guacamole after it's out of the microwave.

Peanut butter if he can eat it would be good for calories also.

Steak, hamburger, and chicken are good also.

I made a mean soup a while back by doing a pot roast in a pressure cooker with a couple sweet potatoes. Once the sweet potatoes are well cooked they can be smashed into a thick puree for a nice thick soup. They taste pretty good that way too.

I tend to not put much of any spices in dishes beyond salt and pepper when I cook them. I figure it's safer to add spices when I eat the food, that way if something doesn't agree with me I haven't wasted a whole pot of food.

I have read that Spam is gluten free. Fried Spam for breakfast might add some calories.

Maybe some coconut oil for cooking would help. It is supposed to be easily absorbed and utilized.

Ok, just some ideas.

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I am so sorry you are having to go through so much. One thing that worked for me to gain weight was Wylde pretzels, they are gluten and soy free. One bag has about 1000 calories. I almost never am hungry and have a hard time keeping weight on but when I needed to gain 10 lbs I would open a bag in the morning and just keep munching them all day with the goal of finishing the whole bag. If he can tolerate them perhaps adding those might help. You have gotten some other great ideas. I hope they are helpful. I'll be keeping you two in my thoughts and prayers. Let us know how your doing when you can and make sure to take care of yourself also.

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Hi Deb,

After thinking about this more, it seems to me maybe he should be seeing a specialist in celiac disease. There are people like Dr. Fassano around who might be able to help. Sometimes they put people with Crohn's on immune system suppressants to give them time to recover a little. There is also enteral food that people can get that is supposed to be hypo-allergenic and easily absorbed. It might be time to look at some other options besides the usual gluten free diet. Another doctor I saw at a recent celiac meeting in VA. is Dr. Gary Kaplan (Center for integrative medicine). He sounded like a good doc but I have not seen him personally.

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Many long-time posters on board know who I am. I don't come around as often as I used to. The last 4 years have been pretty bad for me and my husband (health wise).

Anyway, he is now still very, very thin and needs a 3rd hernia surgery. Surgeon won't do it unless he gains 10+ lbs. It's very difficult for him to gain weight. So we are stuck, not going forward and refusing to go backward. Even I am depressed now; refusing the things I used to love to do; constantly worrying about my husband and what wll end up happening.

So I haven't had much to say, maybe I'd share on board here and there - I guess for a while there I was a regular. So I'll just share this news, maybe ask for some suggestions to gain weight (foods that don't include soy, eggs, frying, spices, fruits/vegetables, and of course gluten, no tomato sauce - this should be a challenge as he really needs to gain and surgeon turned him down because he's too frail. He started with the Ensure, but it's not enough calories.

So sorry to hear of your troubles, debmidge. I know how hard it can be to maintain weight (I am one of the truly malnourished Celiacs) so maybe I can share some idea's with you.

One of the best ways to pack on weight that I have learned from going to weight training classes

is to eat protein but that is not always an easy task. It will give you muscle mass and not fat mass...which is what you really want. I am having trouble getting all the protein down that they want me to eat but I think I may have a slight pancreatic insufficiency going on. If your hubby can tolerate meat and turkey, those are calorie dense, muscle building food choices. Add a baked potato to that, with butter if that's possible, and that will help him gain.

What about calorie dense protein shakes? They can be taylor made but the one I bought is gluten free and I can mix it up with whatever liquid I choose....milk (soy or cow), water or whatever agrees with me. You can even add ice cream, if tolerated, and that makes for a fattening, protein rich drink.

I was going to add that dried fruits have a lot of calories in them but I see he cannot have fruits or veggies. That has got to be tough!

Can he eat gluten-free pasta? I realize he cannot tolerate tomato sauce but there are other options for toppings. A steak and pasta dinner sounds calorie packed.

There are also the gluten-free goodies but I hate to say eat a lot of them because they are so bad for you and you don't want him to add fat, even though it is extra weight. That could cause other problems.

I would think that his doctor might even consider TPN, which is the nutrients through an IV that they have. It can be calorie dense and used to gain weight for people who have trouble with that to the point of being dangerous. I can attest to the fact that sometimes, it is downright hard to eat enough to gain a lot of weight if you are a Celiac.

Most people just don't understand that! :blink:

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I agree with the protein shakes. I use Jay Robb shakes. They are whey protein and gluten free, msg free. These can be mixed with cream or ice cream to increase the calories. I personally like to mix them with cream. I would use these between meals to increase calories and protein.

I am so sorry you are having these problems.

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Can he do cornmeal? There's a dish called polenta that italians make. Just take 1 part plain dried coarsely milled cornmeal, and add to 3 parts boiling water, plus 2 tablespoons olive oil. Stir on medium/low heat until smooth and cooked (about 20 minutes). Then, if he can eat theses things, add a ton of butter to the polenta, or lots of olive oil and some salt. Eat it plain like this. Or let it cool, cut into squares and eat as finger food.

Also, make some of that thick risotto-type rice (arborio or carnaroli rice) (takes about 20 minutes). When done, add olive oil and salt. If he can do butter or lard or bacon or cheese, then add to the rice and stir up.

Can he eat chickpeas? If so, then hummus with added olive oil is quite calorie-dense too.

If he can do dairy: ice cream, heavy whipped cream, clotted cream, rice pudding (without the egg), tapioca pudding (without the egg), full fat cheeses like camembert,

Hope this helps..

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I sent you an email Deb.

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    • Thanks Stephanie & Gemini for the info. that the 4 of 5 doesn't apply to children. I wasn't aware of that until now. 
    • I think the posters above have given you very good information and I will throw in my 2 cents worth.  I am surprised that they did not test her DGP IgA also.  I am sure that would have been positive.  They switched off with antibody classes and usually they do both tests for both antibodies.  IgA is more specific to Celiac but the IgG is also useful.  The testing shows your daughter is producing antibodies to the gluten in her diet. (DGP IGG). THe tTg shows positive for some damage or inflammation. You know........your daughter is only 4.  She hasn't been on the planet or eating gluten that long. It can take years for enough damage to occur for it to be able to be found on biopsy.  I would say it is highly likely that this is Celiac, especially with her symptoms. But because the damage hasn't graduated to bad enough yet, they won't diagnose her. I think you need to do what others have said and get all copies of testing and find someone else who will take a look and give a diagnosis, especially if they have you do a dietary trial and her symptoms go away.  That might be the only recourse if you want faster proof. I know I would want faster.  I would not really be happy if I thought I had to keep feeding her something that was making her sick.  If you keep her on gluten long enough, the diarrhea will probably show up. BTW.........the criteria mentioned regarding diagnosis does not apply to kids.  I know it's silly and stupid but most leading Celiac specialists do not go by this criteria for kids.......adults only.  Keep that in mind because it might come up.  You could recognize it but they might not. Have you considered gene testing, to help bolster a diagnosis? As far as false positives go, it's the other way around. False negatives happen more frequently than many people think.  It's a recurring theme here.  With her symptoms, which is what I had, a bloated belly and tummy aches are telling.  Have they tested her for lactose intolerance?  That can cause similar symptoms, although it sure won't raise those 2 blood tests.  Keep looking for Celiac because there are many red flags here.
    • This 4 out of 5 criteria does not apply to children. I was never given a reason why, but it isn't.     That said, you may try to get a second opinion from another GI who may be willing to give her a firm dx.  We were in your boat 6 years ago and while I'm sure I'll get slammed for it, I wish we had kept gluten in our kiddos diet till he scoped positive for a variety of reasons.  Again, even family is different and you have to find what is best for you!
    • Mnoosh, I had swollen lymph nodes prior to celiac dx and for a while after going gluten free. My neck as well as groin. The groin ones were the worst. Guess what? All gone! It's hard to recall a time line & consider that everyone is different but I think mine completely resolved within a year.  You've been given great information. Just breathe and then again, breathe. You're going to be fine. 
    • It is the only thing you have eaten, so it can't be anything else?  I eat it with no issues so I am not sure how you can be certain that is the problem.  All I am saying is that its sort of "your word against mine and the company's word".  
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