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What To Do Now?
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I guess I am just mostly venting because I'm frustrated that I can't figure out what is wrong with me. Last fall I was having gastro issues (bloating, D, cramping) and also some skin issues - severly itchy bumps that would come and go. I went gluten-free (I realize now that was dumb before seeing a doctor) and the GI issues resolved almost completely except I was still having loose/soft stools and occasional undigested food. I went to a GI doc because of these issues (at this point it had been going on for about 3 months and I also still had random itchy bumps) just to be sure there was nothing else wrong and she couldn't find anything. Obviously she didn't do any celiac tests because I was still gluten-free at that point. She did say I had a slightly elevated folate level which could indicate bacterial overgrowth and also I was slightly deficient in vitamin D. Ironically by the time I had my GI appointment (literally that day), I had a "normal" stool and did for the couple days after. I had also cut out dairy for the past month or so.

So, I decided to start eating gluten again because I really didn't have any reason not to. Yes I felt better without it but I also thought maybe it was just a virus or bacterial infection or something that took a long time to get rid of. I am not so concerned with a definite diagnosis if it is celiac but I am more concerned with some diagnosis if it is NOT celiac if that makes sense, so I am back on gluten just to try to rule it out as a cause. I am still off dairy because I don't want to add both back in at this point, although I have had a little greek yogurt and small amounts of hard cheddar.

So here's what has happened over the past 10 days eating gluten. I have no pain really, but some bloating. I don't know what is "normal" for someone's stomach to bloat after they eat but in the morning my waistline is about 27 inches and then after breakfast it is about 29 1/2 - 30 inches. I have been eating Cream of Wheat for breakfast but this morning I had just a piece of whole wheat toast and a smoothie and my tummy was 30 inches.

I still have "loose" stools and I only go in the mornings. Usually the first one is just loose and unformed and then I may go again once or twice and those are considerably looser, and usually very thin.

I still have the itchy bumps but they are coming in different forms now. I still have the tiny blistery types ones occasionally but I am now getting bigger more bug bite-looking ones. I have two on each arm now and had one on each side of my abdomen earlier this week. They do not look like typical DH but I have no idea what they are. They have sort of like a little indentation in the middle and after they itch/burn they are also sore.

So I guess I am just confused and a little worried because obviously something is not right. It doesn't appear to be celiac but also there doesn't seem to be anything else wrong that shows up on any tests. I am temtped to go back to being gluten-free but even then I had the loose stools and tiny bumps. Maybe I didn't wait long enough? But if it is gluten wouldn't I be having more severe reactions now?

I know this is all rambling but it helps to just get out my frustrations!

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I would consider seeing a dermatologist at this point, your rash does sound like DH. I would ask a Dermatologist to biopsy it...I would tell them you had GI issues for months/years, and that they were unable to determine a cause, and that you went gluten free...and now that are adding it back in your rash is changing/worsening. Ask them to biopsy it (they should biopsy it along a active lession). I would also ask the dermatologist to do the blood test for celiac, a FULL panel.

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I would consider seeing a dermatologist at this point, your rash does sound like DH. I would ask a Dermatologist to biopsy it...I would tell them you had GI issues for months/years, and that they were unable to determine a cause, and that you went gluten free...and now that are adding it back in your rash is changing/worsening. Ask them to biopsy it (they should biopsy it along a active lession). I would also ask the dermatologist to do the blood test for celiac, a FULL panel.

Thanks for your advice! And thank you for reading my long post! :)

I think I will try to make an appointment with a dermatologist.

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    • I figured I would update those who were wondering.  I have gotten the appt. so far moved up to August 30. I am waiting to have gene testing done via swab for all 3 of my kiddos tomorrow. My daughters celiac antibodies came up negative but her IgA is low which the ped said could cause false negative antibodies for celiac so she will need to see a GI dr. also. The pediatrician is going to call the GI to try to get them in sooner. I am keeping them all on a gluten diet until the GI dr. decides what to do. I am on the cancellation list already for my son, however I am not going to be persistent with my phone calls to them until I have the results of the gene test. I really want that result in my hand before going to the GI dr if I can. Maybe if he is positive, along with his bloodwork and my history they can forgo the endoscopy. But he will eat gluten till then.  My husband and I have been very honest and upfront with him as to what is going on and the possibility of the endoscopy and what that entails and although scared in general he seems ok after assuring him that since I have it he has me to help him every step of the way.  Going through his current diet with him I realized that he is truly on such a low gluten diet that I am actually surprised his bloodwork shows antibodies at all!  So I told him to make a list of allllll the gluten he could possibly think of eating and he needs to pound it until the GI visit or endoscopy. Funny thing is everything he keeps thinking of to want to eat...is already gluten free!  The other night we were at a friends and he asked if he could be done with his hotdog. I made him finish just the bread 😂 Thanks for your help and advise and I will keep y'all posted on both kids!  My oldest is a ok as far as all his antibodies. Just actually had a follow up for other immune issues and all his levels are now normal!
    • I like your plan Cara, I may have to include it in my sons.    Poor little guy is still very very sick. I think he is resisting and cheating, despite having the support of two other siblings and a 100% gluten-free home. 
    • Despite it being a nightmare, I did wait for my kids to get biopsies. At one point I had one severely ill child gluten-free and two more waiting having to eat it. It was worth the wait though and I think long term a biopsy may be worthwhile, especially for school. I have already had issues with schools and camps so having a firm diagnosis has been helpful. 
    • Knowing that the reaction to gluten in celiacs is an uncalled for immune system reaction, I was thinking of how a cure would be possible. Maybe a medicine that somehow turns off the immune system. The only thing that i've heard do that... HIV.  obviously that's way worse than celiac. Just some food for thought.
    • Well, you can probably get an apple or something.  You might be able to get someone to boil you some eggs.  But be careful of things like nuts that should be naturally gluten free.  They have almost always been soaked in a flavor solution that usually containes caramel coloring, "soy" (wheat) sauce and other aditives.  If I am really hungry and must eat in a Chinese restaurant, I order plain white rice and steamed vegetables.  But even so, you must monitor it carefully.  The rice sometimes has other substances added to give it a better texture, and very often the vegetables have in fact had "just a little bit" of soy sauce added.  To be fair, celiac disease is hardly ever found in East Asians, so understandably people are not tuned it to it.  Also, culturally, with the exception of fruits, it is generally thought that the flavor of foods needs to be enhanced, so it is had to find anything natural even in the "western" gorceries. Even in the western restaurants, be careful.  Fish and meat and often vegetables are usually pre-marinated. I will not even attempt to address the issue of cross-comtamination, since that is a whole higher order of things. I do know what I am talking about; I have celiac and have worked here for nearly 7 years.  
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