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Need Advice For My Next Step
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13 posts in this topic

Hi guys,

I posted recently about how I was struggling to get better and how lots of different foods were making me ill. Well unfortunately I'm still struggling and need some advice over what to do next.

My background: recently discovered I have a gluten intolerance after being housebound for 2+ years. Had severe fatigue, anxiety, hot flushes during that time. Went gluten free and started to feel better instantly. (Had a celiac blood test which came back negative). First month or so I started my energy started to pick up, but now I'm almost 4 months gluten free and feel awful.

The rest of my family have gone gluten free, and we've overhauled the kitchen to reduce risk of CC. I only eat very plain basic food (porridge with water, plain tuna salad, rice and chicken/salmon). Recently I've had bad reactions (constipation, mild diarrhea, anxiety, fatigue, etc) to so many different foods..

gluten-free bread, Bacon, fruit, tomatoes, cheese, nuts, cereal bars, chocolate, butter.. I could I go on.

Also last week I went I my doctor and he gave me some Pancreatin to see if it helped things. It didn't agree with me at all, competely stopped my bowel movements for a week, and It made me very groggy and unwell.

Sorry this is so long! But I need some advice over what to do next. What tests should I be asking from my doctor? Vitamin levels? Thyroid? I'm getting so frustrated.

Sparky

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What kind of porridge? I can not tolerate even gluten-free certified oats or quinoa.

Have you read the threads on mast cell activation syndrome? Worth reading.

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Gluten free oats. Not sure what else id be able to have for breakfast otherwise. What do you have?

I've never had a bad reaction to the porridge, but I'll probably cut it out just to be sure.

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Rice porridge, Rice or Corn Chex cold cereal, leftover rice or like, today.....canned salmon on fresh greens!  Yes, for breakfast!  Ate a grapefruit and had coffee.  Then snacked on some sunflower seeds.  

 

I'm allergic to eggs, so they are out for a protein source.  So, I typically have leftover meat (i.e. I cook a bunch of chicken breasts and then freeze them in individual packs).  I can't have milk protein, but  I tolerate soy products very well.  I also try to eat some veggies.  

 

You have to think outside-of-box for breakfast!

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So often food intolerances or allergies don't cause severe and swift reactions.  Often they are delayed up to 24 hours or longer.  Reactions can vary with the food.  For example, oats and quinoa reactions follow my first gluten reaction of food sitting in my stomach and pain or tweaking in that area.  Later I get muscle aches, fatigue, etc.   Milk,  though will cause my nose to start running/congesting within five minutes of ingesting.  Later, I'll get gas, abdominal pain and cramping and then constipation.  Garlic will cause mouth tingling and then intestinal symptoms all the way to diarrhea and trigger roscea symptoms.

 

Best to keep a food and symptom journal to help you determine your intolerances.  Not all folks have issues with other foods -- just us lucky ones!   :unsure:

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I'm not one for solid food in the morning - I drink a protein shake every morning (Whey Protein).  But my mother (also a Celiac) loves buckwheat cereal.  (don't let the name fool you... buckwheat is in no way related to wheat... it's actually not even a grain, but a fruit)

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There are a few threads (make that a lot) of threads on what to eat.  You don't have to eat the usual breakfast type things in the morning.  Try eating dinner or lunch in the morning instead.

 

What's For Breakfast Today?
http://www.celiac.com/gluten-free/topic/81858-whats-for-breakfast-today/

What Did You Have For Lunch Today?
http://www.celiac.com/gluten-free/topic/87765-what-did-you-have-for-lunch-today/

What's for dinner tonight chat?
http://www.celiac.com/gluten-free/topic/75238-what-are-you-cooking-tonight/
 

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Also some types of bacon, or cooked ham sometimes have hidden gluten among their ingredients- you have to try to get the most natural kinds of these. For breakfast I tend to have fruit and a bowl of natural yoghourt with maple syrup, coffee or tea..

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hmm....steak and eggs with homefries are gluten free....just sayin'.

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Cheers for all the food ideas. I'll be trying loads of stuff hopefully in the future once I can tolerate them.

Surely though its not right that I had a bad reaction to taking Digestive Enzymes (Pancreatin)? I'm sure there is something else going on. Just can't figure out what.

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Sure , you can react to the digestive enzymes. You can react to anything!

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Well well well! Think I'm on the right track now, thought I would post what's happening.

As some of you mentioned, pretty much all of the food I've had bad reactions to are high in histamine. Thank you those of you who told me to look into to (aswell as the PM) I would never have found it out otherwise.

So I'm now avoiding high histamine foods, eating stuff that's only got low levels of it, as well as adding in some anti-histamines into my diet. I'm sure this is what's been troubling me. I've only had trouble with high histamine foods AFTER going gluten free and starting to make a recovery. Do you guys think this is happening possibly because I was unwell for a long time before being diagnosed (2 years) so now my gut is a bit damaged and is being hypersensitive to foods? I guess I'll have to just wait and see how things go.

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I agree with the porriage as the first thing to try.  Also the bacon.  If you try those things and still have problems I have suggestion for where to go next.  Look at this paper for people with continuing symptoms on the gluten-free diet and try their approach.  http://www.biomedcentral.com/1471-230X/13/40

 

My son and I seem to need to take it one step further and avoid rice too.

 

I hope that you feel better soon.

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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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